Endometriosis 

Introduction 

Endometriosis

Endometriosis is a common condition in which small pieces of the womb lining are found outside the womb. Find out what the symptoms and treatment options are, who is affected by it and how to cope with the pain.

Media last reviewed: 16/11/2011

Next review due: 16/11/2013

Endometriosis is a common condition where tissue that behaves like the lining of the womb (the endometrium) is found outside the womb.

These pieces of tissue can be found in many different areas of the body, but they are most commonly found on the ovaries, on the lining of the pelvis behind the uterus and covering the top of the vagina.

The condition is estimated to affect around two million women in the UK. Most of them are diagnosed between the ages of 25 and 40.

Endometriosis is a long-term (chronic) condition that causes painful periods or heavy periods. It often also causes pain in the lower abdomen (tummy), pelvis or lower back, as well as fertility problems. It may also contribute towards a lack of energy and depression.

However, the symptoms of endometriosis can vary significantly and some women have few symptoms or no symptoms at all.

You should see your GP if you have symptoms of endometriosis so they can try to identify a cause and refer you to a specialist for a diagnosis if necessary.

Read more about the symptoms of endometriosis and diagnosing endometriosis.

What causes endometriosis?

The causes of endometriosis are not fully known, but there are several theories. The most widely accepted theory is that the womb lining does not leave the body properly during a period and embeds itself on the organs of the pelvis. Doctors refer to this as retrograde menstruation.

Doctors have reported seeing this lining coming backwards along the fallopian tubes and into the tummy, and it has also been shown to be capable of growing into the lining of the pelvis on the inside of the tummy.

The endometriosis cells behave in the same way as those that line the womb, so every month they grow during the menstrual cycle and bleed. Normally, before a period the hormone oestrogen causes the endometrium to thicken to receive a fertilised egg. If the egg isn't fertilised, the lining breaks down and leaves the body as a period.

Endometriosis tissue elsewhere in the body will go through the same process of thickening and shedding, but it has no way of leaving the body. This leads to pain, swelling and sometimes fertility problems if the fallopian tubes or ovaries are damaged.

Endometriosis is rare in women who have been through the menopause as this causes oestrogen to be permanently reduced.

Read more about the causes of endometriosis.

How endometriosis is treated

There is no known cure for endometriosis. However, the symptoms can often be managed with painkillers or hormone medication, which help prevent the condition from interfering with your daily life.

Surgery to remove patches of endometriosis tissue can sometimes be used to improve symptoms and fertility.

Endometriosis can be a difficult condition to deal with, both physically and emotionally. Charities such as Endometriosis UK and Endometriosis SHE Trust UK can offer advice and support to help you cope.

Read more about treating endometriosis.

Endometriosis and pregnancy

One of the main complications of endometriosis is difficulty getting pregnant or not being able to get pregnant (infertility).

Although surgery cannot guarantee that you will be able to get pregnant, there is good evidence that removing visible areas of endometriosis with a laser or an electric current during keyhole (laparoscopic) surgery can improve your chances of having a successful pregnancy.

If you have endometriosis and you do become pregnant, the condition is unlikely to put your pregnancy at risk.

Pregnancy sometimes reduces the symptoms of endometriosis, although they often return once you have given birth and finished breastfeeding and the menstrual cycle returns to normal.

Read more about the complications of endometriosis and how infertility is treated.

Page last reviewed: 07/11/2013

Next review due: 07/11/2015

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Comments

The 45 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Gem4983 said on 11 April 2014

I had been having really sharp, painful pains in my abdomen from the age of 18, I would find it hard to walk and move my right leg when I had the stabbing pains and would be almost crippled for a few seconds but didn't really think anything about it. I'd always had really heavy painful periods from the age of 11. I tried every tablet and injection going until I finally decided 5 years later I'd had enough and went to the doctors who sent me for scans, which showed what they thought was a cyst. I was booked in for an operation to remove it but when they did the Laparoscopy they realised it wasn't a cyst but PID and endometriosis. The surgeon couldn't do anything as he didn't have permission, so 5 months later I was back in theatre to have both my Fallopian tubes removed and the endometriosis scraped away. It was great for a few years but now my periods are heavier than they've ever been and the pain is back and it hurts whilst having sex.
I can't have children anyway after they removed my Fallopian tubes so find it rather cruel that I still have periods. I'm going to go back to the doctors soon to see what they'll do this time as I have a new doctor now. Hopefully it will get sorted!!

My advice to everyone is to keep on at your doctor or ask to see another one that will take you seriously. It didn't take me long to get a referral.
Good luck x

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lauradee90 said on 28 March 2014

Hi, I was wondering if anyone would be able to give me a little advice.

I have always had issues with my periods since they started when I was 12. I am now 24 years old, and things have got a lot worse. I work full time and have 2 children (Aged 5 and 2), and this 'thing' whatever is may be has a complete hold over my life. I have had pain in my right side more prominently since the birth of my second child, but have always had niggly pains, bad periods etc, even having to stay off school for a few days each month due to cramp. The pain gets so bad on some days that I cant go into work and have to take painkillers all day, along with hot water bottle etc. I have seen several GP's who have suggested IBS, ovarian cysts, or just general unexplained pain. I had a cyst on my ovary around a year ago which was discovered by ultrasound, but has since disappeared. After 18 months, I eventually seen a gynaecologist who wanted to start me on Zoladex injections for 6 months. I objected, as had heard horrendous things about them, but after 2 months or so, I agreed to have them for 3 months. I am now in my last week of the injection and due to see my GP tomorrow. She has mentioned a laparoscopy in the past, but the gynaecologist wanted me to try the Zoladex to 'rule out' anything else it may be. Safe to say I haven't had the best experience on them, but thankful that they took the pain away for a few months. I am now worried about the pain coming back and what the next steps are. Will I be offered a laparoscopy to see if it is endometriosis as GP/Gynae suspect, or will they try other methods? I have had several methods of contraception over the years and recently had copper coil which expelled, so at the moment I have nothing.

Has anyone been in this situation before? I am so confused and getting frustrated as life isn't the same? What if it isn't endometriosis? In some ways I hope it is so I have an explanation.

Thanks,

Laura x

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babydollpaula said on 26 February 2014

hi there. i suffer from endometriosis .But i have the bad pain everyday not just every month had to leave my job as it has got that worse,is it normal to have daily pain with this condition. any advice would be great many thanks Paula xxx

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chunkie said on 13 February 2014

Can anyone help me as I seem to be going round in circles? I had a Hysterectomy 7 years ago due to severe endometriosis that had attached to my lower organs and my pelvis. My right ovary was left as it was fine and avoided me at the age of 41 going into menopause.
For the past 18 months I have been experiencing burning and sharp pains in my buttocks, right hip and leg. I was told it was some nerve complaint similar to sciatica but I have now been referred to Gynaecology. I was always aware that the endometriosis could come back but never experienced these symptoms before plus the consultant is now saying it is unlikely they are connected?
Has anyone experienced this as it is really debilitating and is affecting my day to day life?

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MimiAnon said on 01 January 2014

Hi ladies,
The surgery isn't that bad.I had laparascopic surgery to remove 2 ovarian cysts caused by endometriosis and the existing endometriosis was lasered off. I had an injection that knocked me out and keyhole surgery performed. It's been 5 years now and I have had no pain ever since. After surgery, all I could feel was numbness and heaviness in belly, no pain or twinges. I was prescribed naproxen for pain even though I had no pain. Took it for 1 week as suggested by the doctor. I was also prescribed contraceptive pills to delay my period so that I had a better chance of healing and stopping the endo. I guess it varies between people. Some friends of mine had pain post surgery while healing from the surgery, I will be seeing the doctor again on Friday to ask him if I could be checked to see if endometriosis has returned as we want to start trying for a baby in February. I was told by the surgeon that some people might find it had to conceive, so I want to make sure everything is alright.

Good luck to those having surgery. Make sure to have a follow up appointment 6 months after surgery to make sure that it hasn't returned. I had to force my GP to send me for a scan as suggested by the surgeon. In my case, it was to check that the ovarian cysts haven't returned.

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Ladysmurfette said on 31 December 2013

Hi I am 26. I had my dd 7 months ago. I've always had painful and heavy periods. Since having my dd I have had extreme pain in my lower right side and bottom of my back. It guests after I empty my bladder and after sex is so painful. I have been with my husband over 3 years. I went to my dr yesterday and she just looked at me and treated me like I was wasting her time. I am in so much pain that sometimes I can't even lift my daughter or even do normal everyday things. I went to the hospital in November because of the pain. Had an X-ray and there was a shadow. He just said it was nothing. I just don't know what else to do. My drs are useless. I need help

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gogirl said on 29 December 2013

There is help. I suffered with Endometriosis from my late teens until my 30s. The pill masked some symptoms and doctors thought I had IBS. After stopping pill to try to conceive my symptoms re-emerged and got worse over a 3 year period culminating in an awful episode of massive blood loss whilst working away and staying in a hotel. This prompted me to see Dr and new female GP mentioned endometriosis for first time. I then experienced a spontaneous pneumothorax (collapsed lung) which consultant could find no cause but suggested it could have been possibly endo tissue ending up attaching to lung- after recovering sought treatment for endo and due to the collapsed lung found Dr very keen to get the problem resolved. Luckily had private insurance and specialist decided upon laser treatment followed by stopping my menstrual cycle for 1 year to give my body a rest from periods. The surgery was keyhole leaving only tiny scar. The medication to stop periods was nasal spray (don't remember name) apparently used commonly as part of fertility treatment - my amazing GP arranged for this to be on a nhs prescription as not covered under med insurance. Result 12 months no periods. When periods started they were 'normal' and within 4 months I was pregnant. I was told by numerous medical practitioners that pregnancy can itself be a cure but that endo can make it very difficult to conceive. This happened in 2000 I am now 46 and have fairly normal periods and no return of endo symptoms. My advice find yourself a GP who understands this condition and the treatment options available and be persistent. I believe the combination of surgery and no periods for 12 months was my cure!

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Millyannagilbert said on 27 December 2013

Hello acr5678
I'm 20 and I've also be suffering from really bad tummy pain some mornings I can't even get out of bed because of the pain. I am having a the operation on the 30th of December 2013 so a day before you. Like you I am really scared about this op and I don't know anyone who had been though it so talking to friends and family is hard because they don't understand the pain I'm going though and the worry I have. I was on codeine like you but thy don't work and so I was put on oramoph which I'm only aloud to take when the pain gets to bad as everyone is worried I may become addicted however I find it only ever takes the edge off.
I also have back pain which will hopefully go after the operation but because of it all I have ha an awful year. I lost my job because of the pain and my ex the same day and so I can't talk to my friends about it because they are friends with him to and won't talk to me muh.
Hopefully maybe we can talk and help each other when we are scared because i don't know if you have found the se but I found no one who knows the pain!
Good luck fr your operation
Milly

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acr5678 said on 25 December 2013

Hi,
I'm 19 years old I have been suffering with excruciating stabbing pains during sex, in my tummy womb and back for around a year and a half and on the 31st of Dec 2013 I will be having a laparoscopic operation to try reduce endometriosis, can any one who has had this treatment before please get back to me and just tell me what to expect?? I am so so scared that it will mean I can't have children in the future, I know that I have been fortunate to catch this pretty early in comparison but the whole thing in the last 8-9 months has started to really bring me down, I am in constant pain, my GP gives me codeine for pain relief but in the last few months I have noticed that they don't seem to work anymore. I just want to cry all the time, my boyfriend is wonderful and has been so supportive and understanding but I don't know anyone to talk to who can fully understand it. As the op is getting closer it's upsetting me even more as I don't want to hear to results of it all I guess,

If anyone can give me an insight as what to expect I'd be really thankful,

I wish you all well

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Fed up mum said on 30 November 2013

Hi there I'm a 24yr old fed up mum of two gorgeous boys. I have been suffering with gynae probs last 6-7yrs started with cysts on ovaries which disappeared during 1st pregnancy then returned then disappeared again after 2nd pregnancy now the pain is back with a vengence no sigh of cysts. Have had ultrasound internals X-rays everything which shows nothing . Have had abnormal smears for four yrs had coal coguaulation done 4 weeks ago and going for pre assessment on tue for dignostic laparoscopy. I hurt after sex my hips pelvis and back . I'm now getting pains down my right leg I constantly have pain sumwere . Have been told it's sciatica ! Pyscoloigcal! Period ! Have marina coil in 18months they say it's it! They think endometriosis ! I dnt have heavy periods , no fertility probs, am finding if I need to urinate I have to go str8 away ! Hurts if I need bowl movements ! I honestly don't no if it is endometriosis and am really scared getting laproscopy incase they dnt find anything . Any 1 no wat it could be? Am getting so fed up this has been constant cuming up to 18 months I'm now on antidepressants I'm so fed up taking pain killers that dnt help my gps dnt have a clue and my little boys 4 and 2 are really missing out on so much because I can barely walk at times :( hope someone feels the same ( without the pain) thank use all so much !!!!!!!!!!!

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DanniElizabeth said on 30 October 2013

Hi,

Anyone else had troubles with their consultant? I have been having bad periods since I was 13, I have been on the pill until 2 years and a half ago and switched to the implant. All was going well until I started having problems with it in Dec 2012, I went to my GP who put me on tranexamic acid which ended up being taken into hospital becuase of chroic pain. I discharged myself new years eve because no was taking me seriously. I have problems ever since. It was came on my period for over 3 months. That was when my boyfriend sent me back to the GP. He sent me for a blood test and an ultrasound. Blood tests results came back as I had high hormone levels (20.5)! So he checked me for postic

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tr1shy said on 21 October 2013

Hi, my name is Trish
I have been suffering with Endometriosis since my late 20's and I'm now 42. I have already tried the hormone injection treatment for six months which worked at the time however, it just came back as soon as the treatment was over. The contraceptive was the best treatment for me, it just worked wonders. Recently I have been taken off the contraceptive pill because of irregular blood tests for my liver and the symptoms of endometriosis has come back! I am so much pain in my abdomen and bowels, I can't sleep, I can't walk properly, I'm in constant pain and I just want to cry all the time.
I just started a course of injections again so will see how I go next month. If this doesn't work, I'm going to request a full hysterectomy. It's an extreme choice to make but this illness is robbing me of a reasonable quality of life. The painkillers no longer work and the pain in my bowels is excruciating. Anyone else considering this option?

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Yummybear said on 15 October 2013

Hey i'm nikki.
im 17 year's old. Ever since I started my periods at the age of 11, it's non-stop problems and pain. When I was in school, I wouldn't go in for the week I was on because the pain was just to much too handle so I would literally spend my days in bed. I went on the pill which then it stopped it for 3 year's, so no periods which felt amazing i just knew each month when i was about to come on because my stomach would swell and shoot pains would be in my tummy. I had to stop the pill because I was going dizzy and passing out each day which they put it down to the pill so i stopped it for a year. In that year the periods became settled and normal but very very heavy but always had the same date each month which I was so thankful. Then 8 months later I became pregnant, I sadly lost the baby due a to a miscarriage but it turns out my hormone levels were very low which I thought why would they be low, so I just start to grief instead of thinking why it happened. Then for 2 months my periods were fine and everything was fine. but suddenly I started to have mega heavy periods, my anxiety became to outta control Im not fit to work and for 6 months i've had a period every 2 weeks, for a week long plus and i'm drainned. They done all kinds but know they think it's Endometriosis and i'm so scared, because i'm 17, young, got my whole life ahead of me and I know it can affect your chance's of kids but i don't want to be stuck on pain killers and pills all my life to stop the bleeding every 2 weeks. My iron levels are so low, there's a possible chance I will have to have Iron infussion's, I have a underactive thryoid which doesn't help and now while i have intercourse it hurt's. Me and my partner's have a good sex life just i'm scared it's going to get worse for me :(. I'm scared I won't have children and I'm scared it's going to get worse. :( Just wish they had a cure for it. I really do.

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User811724 said on 15 October 2013

Hi im 29 and ive suffered with endometriosis for 8yrs now ive had several laparoscopys to remove cysts and endometrial tissues. I have been lucky enough to have two children although the second was alot harder to conceive. My condition has worsened since having my second im in constant pain and strong pain killers such as tramadol no longer seem to be as effective as they once were I take diclofenic in tablet or supositry form dependant on how much pain im in. In recent months im constantly tired got no motivation my appetite varies daily and my periods have now become really heavy and lasting for upto five wks at a time. After a recent scan ive just found out I have another cyst on my left side. Im pushing for a hysterectomy so I can live my life but doctors are refusing this option but have offered to give me injections to put me in a medically induced menopause has anyone with endometriosis had this type of treatment and did you find it effective any personal experience good or bad would greatly be appreciated Thanks in advance Emma x

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teeny39 said on 10 September 2013

Hi haylzp24..I am exactly the same as you..painful sex has had me in tears, me poor hubby never knows what to say! The pill made me very sickly, had probs with the coil..feel like I am back to square one. I'm awaiting to go back to hospital again, but I think I will have to go down the Laporoscopy route, daft I know, but it petrifies me for many reasons..I will say ignore yer gp..it isnt in yer head, endo is physical pain, tummy, sex etc, I even get pains in me legs!! Good luck for your 4 month check x

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haylzp24 said on 05 September 2013

Last september me and my boyfriend had to stop having sex as it was so painful. I had just come off the pill as that was making me feel sick too. I went to the Dr's and she said she thinks i had a cyst. Went along to have a scan and a transvaginal. Nothing was found so i had to go back to my Dr. She reffered me to the gyno who i saw in January this year. She told me to go back on the pill (which i did) and to see her in 6 months time. Well, i was feeling sick again and it did nothing for the painful sex! I went along to my appointment in July and she booked me in for a lap. I had it done 2 days ago. They found mild endo in the pouch of douglas. While the staff were all lovely, they didn't give me much detail. Going to see them in 4 months to see how i'm getting on. It's very sore and i'm getting some shooting pains but apart from that, i'm fine. Hopefully this has worked but won't know for a while. Also my Dr said this was all in my head and me and my bf need to do more foreplay etc. But it wasn't in my head! Just keep pushing your Dr if they ever tell you this. You know your own body. They don't!

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Rycroft172 said on 14 August 2013

Hello, I'm Sian, I'm from the UK and I'm 14 years old. Ever since starting my period at 11, my periods have been irregular and incredibly painful. To the point most of the time where I have to skip or come home from school, stay in bed all day with ibuprofen to ease the pain along with a few other medications to help the pain prescribed by a gynaecologist. Personally I actually fear my monthly period and it reduces me to tears and panic. I loose blood so heavily my blood sugars become very low, lack of apatite, cannot go to the toilet and so on, like a lot of the women on here. I went to a gynaecologist with my mum and we described the situation to her, to find out it SOUNDS like endometriosis however she couldn't be sure without checking through an internal exam. The situation makes me feel very anxious and at times depressed, does anyone else have or have a daughter with a similar situation who could help me?

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Chloeautumnx said on 21 June 2013

Also my GP told me to come off the pill (Yasmin) whilst we investigate but should I have done that? The pain during menstration was still horrible on the pill. X

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Chloeautumnx said on 21 June 2013

Hi, I know you all posted on here at least a year ago but just came across your comments. I'm pretty relieved that I am not alone. But I do feel sorry for you because if your pain is like mine, then it is awful.
I'm Chloe and I'm 20 and I have been living with chronic pelvic and lower back pain now for the best part of a year. My periods have always been irregular, sometimes on time, sometimes 28 day then other times its 30 days. I lived with this pain thinking it was normal. But then I had some pretty bad abnormal bleeding. The doctors thought it was pelvic inflammatory disease, gave me four lots of antibiotics over a 4 week period and the pain was still there. Long story short is that I have the pain all month but is increased around menstration. It hurts with bowel movements and I am getting very dizzy. The back pain is unbearable that I can't even walk or stand for a long period of time. I have just been for an ultrasound and nothing showed up. Got to go back to gynae but don't know what will happen. Endometriosis runs in my family as my auntie and cousin have it. My auntie has had a hysterectomy now though. I wish I had never investigated really as I was living with it before. (With painkillers yes but what will change now?) It was very comforting to see other women my age go through the same thing I am.
X

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Veevee1 said on 11 June 2013

hey Jh28,

Thanks so much for your replie.. really appreciate it .. and well the day after i left my first comment i went to the gp told her about the stories ive read all my symptoms and really told her i felt i could identify with these symptoms.. and finally someone paid attention.. and she said it could really be endometriosis.. so at the moment i am waiting a scan .. have also been for blood tests and she said after my scan we could think about booking to see a gyno depending how it all comes out.. so hopefully very thing will go well.. thanks for the support and i really hope things get better for you soon.. she did speak about the planning a family part .. but i am also only 19 and have a lot of plans which do not include children yet .. not for the next few years.. so i guess id have to replan everything depending on how this all goes.. keep me posted

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Jh28 said on 08 June 2013

Hi veevee1

I was admitted into hospital over a year ago with sever abdominal pain, 6 month previous I had the non hormonal coil fitted with no previous problems to this I had to visit the doctors numerous times feeling that the coil just didn't feel fitted correctly something just wasn't right then a small pain started and gradually got worse till I was unable to sit or stand or just function!! I had very similar symtoms to you..i was took straight to a and e... At first they diagnosed gall stones and after 4 days in hospital they finally removed my coil! Even though i had mentioned that i had complained of pain and could feel it just wasnt right... Along with them doing this I also had numerous scans and internals they discovered a growth on my ovarie and a damaged tube caused by endromitis... I was put on anti biotics and sent home... Over a year later of going back and forth to doctors and gynocology which they tried to fob me off saying that because j am childless they would only investigate if i wanted to onto have ivf a very life changing choice that i am in no way ready to make!!! i decided to get advice from a second opinion because i wanted an investigating lap not a fertility lap there is a difference in the two.. I finally had a laparoscopy yesterday I must say it is not as bad as I anticipated and the feeling of gas in my shoulder is the only real pain apart from a slight disconfort to stomach.... The outcome is a lot more positive and there is treatment available so if you don't feel better keep on at your doctor and ask to be referred to the hospital. Good luck and I hope they help you x

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Veevee1 said on 05 June 2013

hello everybody.. i just came across the site.. i know alot of posts are old but if somebody could give me some answers that would be great since 2011 i started having extreme pain in my back and somewhere inside my below when i open bowls or pass wind or urinate.. even to sit up straight while on a period. its inside my uterus somewhere its extremely painful it makes me scream and cry. I also get very bad back pain when on periods sometimes feel i cannot straighten my back.. i feel fatigue nerly every single day i feel dizzy and unwell.. sex can also be very painful specially wen it is deep.. i have been to hospital for the pain it has caused me ... i feel depressed and i feel i cant cope anymore with this pain when my periods come i refuse to open bowels to the point im crying and even so holding it in makes the pain bad .. ive been to the doctor theyve said its irritable bowl syndrome (by a doctor pressing on my stomach only )and on a different occasion i was told it was that my uterus was putting pressure on my bladder but i wasnt told why that was happening by my gp.. and its extremely odd as i dont even think thats normal either... today i can hardly cope with my fatigue my hands and arms feel lifeless , every single day i cope with feeling bloated at different times of the day i want to go to my gp tomorrow but im scared they wont help and i just want some answers could anyone please tell me if they have any close symptoms .. or what i can say to me gp to get them to really take a look? or to be referred eles where?

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Itstaken said on 14 May 2013

Hi ax175
I had all the same symptoms as you.
I had been to the dr numerous times but they said they weren't concerned about it.

I ended up seeing a fertility specialist as I wasn't falling pregnant after 15 months of trying. Straight away he scanned me and said I think I have endometriosis, so he booked me in for a laparoscopy.

It turned out I was riddled with and and a stage 3. He removed it but said we would have o go through ivf.

I have had 4 failed cycles of unfortunately ivf stimulates the growth of endometriosis. And these last 2 months all my symptoms have returned :(

Please take yourself to see a specialist .

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deckat09 said on 08 May 2013

so since having my daughter 1 and a half years ago i have had nothing but problems back and forth to the doctors i have been giving 1 coloscopy thought i would come on here and it turns out what they thought was ibs and an overactive bladder seems to sound alot like endrometriosis as i have pretty much all the symptoms apart from painful periods (although i do get really bad back pain) so my question is will i go back to doctors and see what they say as i have another coloscopy booked for a couple weeks time or.will i just wait till i get that?

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vix2107 said on 29 April 2013

Hi AX175 i have similar symptoms but also have a couple of medical problems also, my uterus is tipped which causes pain in sex, bleeding afterwards and general odd pains in my groin area, i also need to pee alllll the time i go every hour. That could be the cause for u too, however i also have ovarian cysts which cause groin pain also. It could be worth insisting your doctor sends u for an internal xray thats how i found out about both of those.

Hope that helps

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ax175 said on 12 April 2013

Hi! I'm not sure if anyone will be able to answer this or not. I'm really worried that I have this - I have been complaining to the doctors for months of painful inter course, bleeding afterwards (which really puts me off having it) and random bleeding throughout the month, I get abdominal cramps and really have bad bowels, including toilet urgency and it being painful, and blood after stools. I'm also so tired all the time, find it extremely difficult to concentrate and I'm never usually like this. I have been tested for STDs and various other infections, all negative. This is the only condition I've come across to account for all my symptoms. I have had a womb examination, only performed by my GP, in the same way they do smear tests apparently, and she said my womb was healthy - would a sufferer of this have a healthy womb? Thank you in advance to anyone who is able to offer advice.

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nic c said on 21 January 2013

Well hi everyone I have been having excrutiating pelvic pains for nearly a year now (not as bad as some of you) but the same back and forward to the doctors when my periods started to be late without pregnancy. The monthly pains kept getting worse but i was also getting severe pains while ovulating too. I am on tablets to help me sleep i also take medication to empty my bowel i suffer with bloating of stomach and severe everyday constipation. After being told i had IBS then a blocked bowel even after I had a scan when they found my womb lining too thick, I am only now beng referred to a Gynaecologist to check for endometriosis. I am 34 and really want a child but does not seem to want to happen, it has ruined relationships in past.
I have my appointment 4th Feb 2013 so fingers crossed i will keep you all updated . xx

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Happydaze said on 20 January 2013

I suffered for 10 years before my company HR called me in because of all the days I`d had off sick. Immediately the woman doctor mentioned endo (I`d never heard of it before) and told me to go back to my GP and not leave until I was referred to hospital. (I had been treated unsuccesfully for irritable bowel and other stomach complaints by my GP) Sure enough, with the knowledge that this wasn`t all in my head, I made my doctor refer me. I went to hospital, had endoscopy tests and other tests. Not long after I was diagnosed with endo. (I was 40 at the time and had been trying to get pregnant with no luck) I was in such a lot of pain that I convinced my doctor to give me a full hysterectomy. They were very reluctant as they thought I might change my mind and want children, but when I attended one of my appointments in pain and not having been able to sleep for the previous week, my doctor took one look at my face and told me I could have my operation as soon as I wanted. I had a full hysterectomy at the age of 41, they found scar tissue, blocked fallopian tubes and my bowel, bladder and everything else stuck together with scar tissue.
I haven`t looked back since my operation. I had forgotten what it was like to wake up or go to sleep without pain.

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kevaine said on 28 October 2012

Oh, how I can empathise with many of those who have already left comments...
Just as so many have pointed out (including kaucee, mummyamy, cuttress, crispnm, amberg and wiggs...) Why on earth is endometriosis not taken seriously by medical professionals?
Endometriosis is a serious, debilitating and chronic condition that causes misery for the person with it, and misery for their friends and family. It is under-researched, misunderstood and frequently misdiagnosed - quite simply, I suspect, because the medical fraternity and Government, alike, fail to take it seriously.
Surely anyone can see, just from the number of sufferers who have commented here - Endometriosis causes a huge number of problems, all of which can take their toll on a person's quality of life. After all, if anyone were to be told that they had a disease that could cause chronic pain, fatigue, irritability, bloating, bowel problems, nausea... ( I list but a few common symptoms)... as well as possibly leading to infertility, I am utterly certain they would be distressed by this. AND RIGHTLY SO!
I have Endo. It is a nightmare, and has ruined my life. Symptoms began in 2002 and continued steadily worsening until finally, in 2011, doctors listened to me and finally I got the Laporoscopy I so desperately needed. Since then, I have had 2 further operations for Endo. I suffer chronic pain, and also have M.E. (Endo can trigger or make worse co-existing complaints). In the meantime, my fertility has been wrecked, my career progression halted, and my marriage strained.
Why is it so hard for people to understand that Endometriosis is a disability, in the truest sense of the word? Even websites like this trivialise an illness that can have so many negative effects on life.

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kirstykk said on 15 October 2012

im having a laparascope in december, after having these excruciating pains and bleading for 2 years.
they said i could have adhesions from after i had my c section, but not sure im 18. im really worried.
ive heard you can become critical from endo, if so why are we not put higher up on the priority list?
ifor 2 years ive been fobbed off with its just cyst on ovaries but not over 5cm so wont do anything..... this is not ovary problem due to cysts i feel like im going to give birth, agony all in my bag stomach hips and legs. there came a point i couldnt walk my legs completely went dumb as i was in so much pain.

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User716976 said on 06 October 2012

Hi

I am 22 and have been referred to hospital to see a gynae. I am just wondering how long people have had to wait for their 1st appt. I have been waiting since 1st Aug and this is exhausting. Thanks. Rach x

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9bubbles4 said on 10 September 2012

CUTTRESS40 how did you start your fight for DLA where would I start, many thanks for any help :)

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cuttress40 said on 05 September 2012

I was treated for Endometriosis in 2008 by having a TAH, plus various other things at the same time. I was a major operation.
A month later the disease had returned.
My Gynaecolygist, who now a professor told me that I am one of the worst cases he had seen in his entire career.
There is no cure for this disease, and I am disabled by the problems it has caused me physically.
I am forever annoyed by this website for failing to acknowledge that this disease does cuase disability as I had to fight for DLA. Why can't they class it the same way they do asthma or some other debilitating disease that has been acknowledged as a disability simply by causing health problems that immobilises its victim?
Endometriosis is not as simple as it has been cranked down to be. It is a life debilitating condition that thousands if not millions of women suffer with!
Not enough doctors know enough about it and keep referring to the myths! Thankfully my local hospital know me well enough, they are helping me through some really tough times in the A+E dept. Please government and DWP Please start listening to the sufferers!

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cherelle20 said on 04 September 2012

hi i really need help i am 20 years of age for the past 6months now i have been suffering with abdominal pain and back pain. i have been to my gp numerous times and have been refrfered to hospital for tests. so far i have had 2 ultrasound scans and a cystoscopacy (sorry about the spelling) i feel that i am being fobbed off all of the time but the pain is getting unbearable. i collapsed on saturday and was rushed into hospital. thereni had x rays an ultraound in that they said i had a little cyst on my overy but was only 1 and a half cm long so they were not worried. my symptoms are: lower stomach pain around my bladder and pelvis up around my back near kidneys,also recently i have developed pains in my legs like a throbbing vein or muscle feeling my stomch is constantly bloated to the point i could easily pass as 5months pregnant. i feel tired and weak. endometriosis has never been mentioned to me before my auntie was diagnosed with this ages ago and just readng through these comments i can relate to alot of what is being said. did u all feel the doctors were not being very helpful and how long will i be suffering with this untill i could be diagnosed. i feel very depressed about this as being 20 and not being able to do as much as i should be doing. please if any one has any advice would be very greatful. the hospital have now disharged me and no i have to wait so long for gynecoligist appointment. does this sound like i am suffering from the same thing? and is there anything i can do to speed up the diagnosis? thanks x

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Yvette tamara said on 25 June 2012

Hi I am a 53 year old women my daughter had endometriosis when she was 23 stage 4 the doctors put it down to bad periods I had never ever had a bad period in my life always every 28 days and only 4 day bleeding and still at the age of 53 I had no sign of change of life then suddenly difficult in going to the tolit and undesirable pain i went to the doctors and was told I had a prolapse womb but with prolapse you should not have pain I was rushed in as could not stand the pain scans where done no sign of any problems after 3 days on II V antibiotics there took me down and found 5 cysts and stage 3 endometriosis and due to go back to have have my prolapse womb removed at 53 I had no idea I just wanted to post this so if anyone else thinks its impossible at my time of life to get this think again love to all of you who have to bear this painfully edometrosis x

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0xashleex0 said on 09 May 2012

This is for Louise... i am going through the exact same thing! I was admitted to hospital in March after having my implanon taking out in February of this year... they thought it was appendicitus and then kidney failure... they ended up treating me for pelvic inflammatory disease but when speaking to doctor they said that due to swabs coming back and me never having a std it was not this... i am in constant pain all the time and have to rely on neropam to touch the pain... my doctor has me on about 15 tablets a day and i am still no further forward... all i want is to know whats wrong but they keep saying its no a gyne problem first of all after me being discharged from hospital after 4 days in... went back today for different tablets and help as i feel sick when i eat and when i do i look pregnant! not the best... If you find out any information please let me know as i think we are going through same things... thanks Ashley, 20 x

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amberg7 said on 01 May 2012

Endometriosis,I don't know how much more i can take. Have had this from i was 15 now 36,running to gynae half my life and still no further down the road. Have suffered from severe depression for the last 10 years because of chronic pelvic and lower back pain caused by my endo and have gained alot of weight. Gynae have refused to operate this time until i lose weight due to complications. Please i need some strength from somewhere to motivate me to lose weight,i really need this operation! Endo is in my nose now aswell,it is so painful the adhesions come every month and bleed,it's agony. Help me be strong!!!!!

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Wiggs84 said on 28 April 2012

after reading some of ur comments.im glad im not alone. i have been a carer in acute setting for years and now am a rehab assistant. and it still shocks me how professionals can fob you off in different ways.
i have always suffered with painful periods, i went on the pill at 16. and was on it a long time. i decided to have a break and for the 2yrs i did it was auful. i had 2 period a month,14day one etc. i thought this was normal. but the pain was hell. i was living off femifax as only thing that touched the pain. i went to doctor i was with then who said she thinks i have endometriosis.this was 3yr ago.gave me no advice on how to deal with it. i went back on pill. things were better,
but then january 2010. on a period i was having terrible pain dizzyness, they took me into too hospital and queried appendics, but i knew different. however they took them out as they were slightly inflamed. then this year i changed from yasmin pill to microgynon. half way threw packet in march had a period, then once finished packet had another. just before easter had shooting pain low in belly from either side (similiar to pain before appendics were removed) but with a pulling sensation. belly started looking like 3months pregnant. couldnt get appointment at doc, saw two doc in community who tested pregnancy etc. both just gavestrong pain killers and said see gp.i got sent home from wrk thursday, easter friday came black discharge followed what seemed like a period. finally after 6days of hardly being able to walk. doctor done swabs while pulling faces,and tried to tell me it is the pill. and maybe i shud come off it. i said it will be worse trust me. swabs were cleared and belly gone downn i have feeling ovarian cyst. so far had 2 periods in march and april.and just tired all time. i am in pocess of changing doctor surgery, and hope i will get to have a scan at some point. thank you for taking time to listen to my story. louise,27.

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crispnm said on 08 September 2011

i had my laperoscopy done on the 18th of last month and am still stuffering major pain, they removed my endo but im really scared of what is still wrong with me i have been bleeding heavily and been back to the doctors 5 times since my operation. I am being refered to have an endoscopy done now aswel to discover what else is wrong!

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TMart20 said on 28 June 2011

I was diagnosed with endometriosis 6 years ago, at the age of twelve. Wasn't exactly the best news I've ever heard, especially as every time I have the patches lasered away the pain always comes back within a year. Unfortunately I don't think it will ever go away 100%, and the pain has had a severe impact on my education. The sooner a cure, or more permanent solution to getting rid of it is found, the better.

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mummyamy182 said on 24 April 2011

i have been suffering with severe pain and as of yet the hospital havent diagnosed anything. i ended up in hospital for 4 days last week and they still found nothing. i was doing research online and found endometriosis and i think this may be what i have but how do i go about getting this checked?

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freyamac said on 21 January 2011

I had my endometriosis treated at Stepping Hill Hospital with a Dr who was absolutely amazing, he made me feel reassured and really cares.
I had surgery to have it removed, and over a year later it still hasn't come back and my life is so much better now.
Mine started in my teens and got progressively worse. My symptoms were like a 'shock' feeling up my backside when I went to the toilet and after that could not sit down.
I cannot thank the staff on the womens unit enough, great people.

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TerriBerry said on 08 July 2010

hi i am only 16 i started my periods when i was 10 the pain was realy intense back then but as i have gotten older the pain has gotten alot worse 3 weeks ago i went to the Dr's to tell them what was wrong. 1 week later i was in the hospital having swabs taken, 8 days later i had my pre ops done, On Tuesday 6th July 2010 i had a laperoscopy as they where concerned as to what was happening inside, And what they found WAS GRADE 3 ENDROMETRIOSIS as i am only 16 me and my family being my mum dad gran exc are very scared and concerned i had been laserd that day aswell.

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kaucee said on 01 May 2010

they will try Hormone tablets or injections to see if this will help, if not they can remove it by burning them off this helps but can come back.
i know as i was under the best that specialises in endometriosis.
but you have to push for it at some doctors
my has returned but my doctor keeps fobbing me off despite i was promised if it comes back i will not have to spend another 10months proving this and will got straight back for my treatment not on the hospital waiting list either, as i would be a returning patient not a new patient.
so if your in load of pain seek to see the specialist
the pain and you can get back on with your life
don't leave it as 1 women actually had to have her left side of her womb totally removed.

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kaucee said on 01 May 2010

they will try Hormone tablets or injections to see if this will help, if not they can remove it by burning them off this helps but can come back.
i know as i was under the best that specialises in endometriosis.
but you have to push for it at some doctors
my has returned but my doctor keeps fobbing me off despite i was promised if it comes back i will not have to spend another 10months proving this and will got straight back for my treatment not on the hospital waiting list either, as i would be a returning patient not a new patient.
so if your in load of pain seek to see the specialist
the pain and you can get back on with your life
don't leave it as 1 women actually had to have her left side of her womb totally removed.

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Symptom checker

If you have a health problem, our symptom checker can help you manage it or find out where to go for help

Michelle Middleton

Life with endometriosis

Michelle, a mum of two, describes her experience of endometriosis, her symptoms and her treatment