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.

Michelle Middleton

Life with endometriosis

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

Endometriosis is a common condition in which small pieces of the womb lining (the endometrium) are found outside the womb. This could be in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum.

Endometriosis affects around 2 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 or heavy periods. It often causes pain in the lower abdomen (tummy), pelvis or lower back. It may also lead to lack of energy, depression and fertility problems.

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

If your GP suspects that you have endometriosis they will refer you to a gynaecologist (specialist in the female reproductive system). The gynaecologist may carry out an examination of your fallopian tubes, ovaries and womb, known as a laparoscopy, to check for patches of endometriosis.

Read more about diagnosing endometriosis.

What causes endometriosis?

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

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 menstrual blood (a period).

Endometriosis tissue anywhere 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 damage to the fallopian tubes or ovaries, causing fertility problems.

Treating endometriosis

There is no known cure for endometriosis. However, the symptoms can often be managed with painkillers or hormone treatments, which help prevent the condition from interfering with your daily life. Surgery can sometimes be used to improve symptoms and fertility.

A healthy diet can improve energy levels and help regulate bowel movements and sleep patterns.

Pregnancy sometimes reduces the symptoms of endometriosis, although symptoms often return once the menstrual cycle returns to normal.

Read more about how endometriosis is treated.

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

Endometriosis and pregnancy

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

Surgery can improve fertility by removing endometriosis tissue, but there is no guarantee that this will allow you to get pregnant.

Endometriosis is unlikely to put your pregnancy at risk. However, there is some evidence to show that women with endometriosis are slightly more at risk of complications during pregnancy such as pre-eclampsia, a premature birth or the need for a caesarean section.

Read information about how infertility is treated.

Last reviewed: 26/01/2012

Next review due: 26/01/2014

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Comments are personal views. Any information they give has not been checked and may not be accurate.

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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