Endometriosis: Michelle's story

Michelle Middleton

Michelle Middleton from Silsden, West Yorkshire, became unwell after the birth of her son when she was 28. She was diagnosed with endometriosis at 29. 

Endometriosis UK helpline: 0808 808 2227

"After I had my son Leo, I didn't go back on the pill. I'd been taking it since I was 14 and, looking back, I think it masked my endometriosis symptoms."

Symptoms

In endometriosis, cells of the womb lining appear elsewhere in the body, for example around the bowel. They bleed in response to the menstrual cycle, causing pain, swelling and scar tissue (adhesions). Symptoms vary, and some women don't notice any at all, but for others it's unbearable.

"My periods had always been painful but not intolerable. Although I had irregular bleeding when I was 18 or 19, nobody mentioned endometriosis. They changed my contraceptive pill to see if that would help, and the results of a cervical smear test showed irregularities. This led to a colposcopy (a procedure that examines the cells in the womb), and pre-cancerous cells were removed.

"I'd also had trouble with my bowels – bloating, diarrhoea and sometimes bleeding. I know now that these can be symptoms of endometriosis."

Pain during sex and fatigue

“At 25 I came off the pill to start my family. I got pregnant quickly, but miscarried. My second and third pregnancies happened soon after, and although Alana and Leo were premature, they're both fine.

“After having Leo, my periods were heavier and I gradually started becoming unwell. The main symptom was fatigue. Pushing the baby buggy up a hill was exhausting.

"Then, last summer, I had severe pain during intercourse. Endometriosis adhesions are fibrous, like a web, and can join organs together. Apparently my ovary is attached to my bowel, and this could be causing the pain. I also had a bad bout of bleeding after sex. I bled for about a week."

Unusual bleeding

“The first GP I saw told me to wait and see what happened, but I didn't want to do that, so I saw another doctor. He gave me medication to stop the bleeding, sent me for an ultrasound scan and referred me to a gynaecological consultant. The scan showed a small cyst on one of my ovaries, but they said this was nothing to worry about.

“At my consultant appointment, I was referred for a laparoscopy (a surgical procedure in which the abdomen is examined with a tiny camera). It's the only way to diagnose endometriosis definitely. When I went back for my follow-up, the consultant said, ‘Well, you’ve got endometriosis’."

Temporary menopause

"I’d never heard of it. He didn’t really explain what it was, but said they’d give me hormones to slow down my ovaries and put me in a fake menopause, and hormone replacement therapy (HRT) to combat side effects such as hot flushes.

“I was hurrying to pick up the kids from nursery, and I think I was in shock because I didn’t ask any questions, which isn’t like me. I had the injection, and when I got home I thought, ‘What have I done?’.

“The injection helped reduce the pain during sex, but it affectedly me badly. At first I felt great. I had so much energy. But it soon got worse. I was exhausted and emotional. I felt as though I had premenstrual syndrome every day. My bowels caused problems, and I became really bloated. 

“After two months I came off the HRT and felt better. I stayed on Zoladex, the fake-menopause injections, for four months, and stopped having periods during that time. I've been offered another course of Zoladex, but I’ve decided to wait for a few months before taking it."

Getting healthier

"I want to let my menstrual cycle get back to normal, and I’m keeping a diary of my symptoms so I can relate them to my cycle. I’m trying natural ways to improve my health. I eat more healthily, I’ve stopped having caffeine, I’m jogging, and I feel much better.

"The pain during sex has returned, which is disappointing.

“If a woman has been diagnosed with endometriosis, I’d want to reassure her that she's not alone. People worry about how the illness will progress, but it’s different for everyone. 

"If you go to internet message boards and read about people who have a very bad experience of endometriosis, try to be objective. There will be people who no longer write messages because they feel better and are getting on with their lives.”

Page last reviewed: 07/11/2012

Next review due: 07/11/2014

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Comments

The 7 comments posted are personal views. Any information they give has not been checked and may not be accurate.

LaneyLane said on 11 November 2013

As long as I can remember starting my periods they've been a nightmare. I too missed a lot of time of school and later on work.
I found GP's to be a nightmare, I actually had one doctor tell me his wife had bad periods and she just has to put up with it! I am now expecting my first child after being on the pill for 8 years. The pill for me was a god send, totally got rid of the painful periods. I was diagnosed shortly after going on the pill with IBS. I have suffered from it since, especially around my period.
Unfortunately, the pain is back. I never would have thought it would return whilst pregnant. Not to mention that the IBS likes to rear it's ugly head at the same time.
I am so fed up of people telling me that endo 'usually' gets better in pregnancy... I don't care about usually, I'm in agony! It seems I just have to ride it out until after the birth and then stamp my feet until someone listens. I read about this all the time, women are made to feel silly and to put up with it!?
I was never diagnosed with endo, I was in the middle of tests at the hospital when I couldn't hack the pain anymore and ended up in A&E, which led me to go on the pill. I was also told by a doctor at about age 14 that I could either go on the pill or have a baby! This shouldn't be the first things offered to young girls, no wonder there are so many girls and women who feel like they are alone with this horrible disease.

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specialstace said on 05 April 2013

hi! Im 30, no kids , and ive known through blood tests and symptoms that ive hd pcos for around 15 years. After years of irregular periods, agonising period cramps and clotting, pain that literally leaves me unable to move at all from the fetal position, it can sometimes happen after or during sex or for no reason at all, and its this extreme pain that is bothering me most! Its like half between my pelvis and ass, i cant move, doubled up and most certainly cannot put any pressure at all on my rear or the shooting contraction like pains get worse, my stomach swells, it lasts around 2 hours then i am left bloated and sore for a few days. I have also had very bad discharge that lasted about a month, it was almost black, like melted chocolate to be honest which tells me i have chocolate cysts, one of the main reasons i think i have endometriosis. I was sent in dec for a pelvic ultrasound as i wanted to know the reason why this is happening. So i got a letter telling me i have pcos....and i should go on the pill, i already knew this, i still have no explanation as to why i get this pain! it is so frustrating, not every woman who has pcos gets this pain, i want to know why i do! so now ive to take the pill, dusguise the issue, then wen i decide to try for a baby i will be bk to sq one :( same issues and a huge waiting list to get help falling pregs, Gp's are the worst drs out there, just palm u off with script like explaination! ive been put on the cheapest most commonly prescribed pill microgynon....not even supposed to be helpful for pcos sufferes!!! im so annoyed and angry, ive bn given no info on wat ovary i have cysts in, how many, how large, the nhs rly need to help women like me as they just dont realise wat we go thru.
Sorr for my.little rant but im so sick of not knowing whats going on inside me, its my body and my right to know. Anyone else get this horrid pain? plz let me know xx

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Mother E said on 26 March 2013

I was diagnosed with endometriosis today. I feel very sad and weepy because for years I have been suffering with all sorts of symptoms that led back to this dreaded disease. I even started thinking I was going crazy or maybe becoming a hypochondriac. My doctor didn't take me seriously, didn't listen to me. I am still trying to get my head around this diagnosis. I just want to be normal.

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lucyp2013 said on 17 March 2013

i am 19 and was diagnosed with endometriosis november 2012 after having a laparscopy. i went private as the nhs just dont want to know, they think that young people don't suffer the same as older people and that we cant have the same health problems as older women. i went to my doctors numerous times complaining of severe stomache camps and pains, the amount of time over the years that i had to have off from school because my periods were just too painful i have lost count of. i went to the doctors again in november and they said because of my symptoms and the pains that i was getting that i needed to get to hospital as soon as possible as they thought i had an accute appendicitis. i was then in hospital hooked up on saline drips and morphine for pain for a week being passed between the surgical team and the gynecological team on the nhs, before i was sent home a the weekend after being there since Monday. i was sent home from the hospital with painkillers and basically told to get on with this which i find is totally unacceptable. i was told i couldn't be in pain as cysts dont cause pain but i was never told why i was in pain. so went private i had an laparoscopy and was found to have severe endometriosis on my kidneys bowels ureters pelvic wall, had to go to a specialist surgeon to have the removal of the endometriosis, he recommended to me to have the mirena coil put in for pain control as it is meant to be really good for pain control, all i can say is a huge thankyou to that surgeon as he has got rid of the endometriosis and i haven't had any pain since march 2012 when i had the surgery it is now march 2013. i feel for all you women who have had to suffer with this for years, i know what you have gone through from personal experience, i personally think the nhs needs to be more aware of this and to actually do something about it.

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DelightfulDee said on 09 August 2012

I have suffered from Endometriosis for over 20 years, the NHS are just not interested in helping, I have had 8 rounds of surgery including eventually having a hystorectomy which has helped, but I still suffer from Endometrioma (chocolate like cysts)

Everytime I have pain, I'm told that I can't be in pain, because the endometrioma are too small, and before they said there wasn't enough endometriosis to cause pain, luckily for me I fought hard enough to see a specialist, who confirmed I had endometriosis on my bowel the size of my fist, which he removed.

I constantly have to fight for every appointment, every pain killer, every ounce of help. If it wasn't for my family and friends providing pain killers I don't know where I would be now. Someone has to do something to help, there have been times when I have considered suicide the pain has been so bad!

I look forward to the day I go through the menopause, then hopefully all this will help.

If anyone is going through the same thing, I would advise to continue to fight and stay strong, there are days now when I am pain free, and on those days I live my life to the full x

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kagz said on 24 April 2012

I also have endometriosis which ive had for quite some years i carnt go on the pill coz of blood presure,but tried the depo injection which has caused so many problems had it last year but still suffering more than ever now.my doctor has basically said try the coil which i really dont want,im in so much pain and feel like im getting fobbed of,does anyone else feel like this.

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User649482 said on 27 February 2012

I read ur story and I was able to relate to everything u have been faced with. My story is pretty much the same. Accept I was diagnosed in 2009 with an adenomatos polyp in my colon. I mean yes I have been diagnosed with endometriosis when my ob doctor performed a laparoscopy. He had to cutt my colon as it was attached to my right sided pelvic wall. But I think that this pre-cancerous polyp is related to the endometriosis. I've had a lot of issues with my bowels with this disease u and I are both playged with. I've had a lot of issues with build up in my colon and irregularity. I did the same as u with changing my diet and exercising more but it has proven to be more of a struggle with how tired I get reguardless of what I do. I even tried an all fruits and veggies diet and that just messed things up more. I started having flu like symptoms. And now its worse. I feel more pain, my periods are out of control with blood clots and I'm more tired and losing weight. I feel alone sometimes. My husband thinks I'm crazy because I have all of these health issues and he thinks I'm making this all up with the pain and stuff. But he doesn't understand what I go through each and every day. And yes some days are better than others but this is such a struggle.

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Next review due: 16/11/2013

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