Still suffering 24 years after hysterectomy

Hi, I'm looking for some advice. I was diagnosed with endometriosis in 1987; my gynaecologist had no idea what was the matter and decided that to rule everything out they would carry out a laparoscopy. I had a huge cist on my ovary and pelvis, I was riddled with chocolate cists and my womb had dropped. although devastated I was also elated, I had a diagnosis, I was not neurotic!!! I was 19 years old and was married 12 days before the surgery. I was prescribed Danazol, 4 months and 4 stone later, it was agreed it hadn't helped so I had a laparotomy and Gilians ( I think that what it was called, my womb was lifted) the cist was cut away, chocolate cist burnt away and my womb lifted. Throughout all this time the best advice I could be given was to get pregnant it will make everything better, I chose not to at the time and went on the pill, I then underwent more tests to see how things were and was told that I was no longer able to fall pregnant, but I stayed on the pill to be sure. I year later I was pregnant!!! (My beautiful daughter turned 26 today, I count myself very lucky) Pregnancy however did not make things better, it was worse, so when my baby was 2 I had a hysterectomy. They took everything except my right ovary, I was 24 years old. Over the years I have suffered many different symptoms that scream endometriosis and I have been able to see how much the diagnosis and treatment of endometriosis has improved. But to that end over the past few years my bowel, bladder, lower back and abdominal pain have become unbearable. so back to the Drs I go. After jumping through every hoop that the NHS puts in my way I eventually get in front of a gynaecologist who tells me its all unlikely to be endometriosis because I have no womb!!! In fact I was told " you have no womb to make the endometrium dear", I tried hard to challenge him and suggested that yes I think it was. I have left waiting for an MRI but feel totally deflated how do I make my 'living in the dark ages' consultant realise that he's wrong and I'm more than likely right??

thank you for taking time to read my rant, I so needed to offload.



13 Replies

  • I never truely believe that any doctor gets everything removed during any surgery!!

    I think the best thing for you to do is have a look on this website to see which centre is the nearest to you, then maybe see if you can research the consultants there. After you've got an idea of where you want to be referred to, tell your GP you'd like them to organise it as the other consultant was dismissive of your daily pain and you want an expert second opinion....its your right to be referred, don't leave there until you get what you want :-)

  • I agree go get a referral to BSGE clinic and see their gynae as they should at least believe you. MRI can only show endo if done by a specialist operator.

    I too had hysterectomy and both ovaries removed but on,y in Feb 2015. As endo left behind it continued to grow - with no womb or ovaries!!! I had an ablation but still in pain. As they were done by General gynae I'm now trying to find A BSGE clinic that will properly excise endo.

    Good luck and keep reading here and ask any questions.

  • In my case they only did it once and to tell you the truth it was fun for 4years to be normal for a change have normal periods, but my specialist surgeon had advised me that these surgeries can only be preformed once in my whole lifetime, that being said reason why is of scaring internally that never goes away, with that scarring in ones body means endometerios can quickly spread and grow on scar tissue, please try the natural approach like I am n rest of my friends Endovan pills suppose to cure us and eventual it's gonna make it disappear and we will live normal lives with normal periods without aggressive surgeries 🙌🏼🤗

  • I sure hope the Emdovan helps.

    You are right . This is a one time shot surgery therefore get a dr who only specializes in this .

    If even a spoon touches your ovary it will leave a scar.

    The adhesions that form both from endo and surgeries can cause serious damage .

    I have researched this a lot.

    I would never let a reg GYN do this surgery. It may mean travel but find the best dr you can

  • Yup today I ordered it with having a 3 months supply got a 20% discount on top I Put in a coupon code that saved me an additional $15.00 on top. It's supposed to arrive at my door within 5-7 business days via ups. I'm in Canada I hope they converted it to Canadian dollar vs usd currency costed me like $152.00 can't wait for it to arrive I'm so desperate at this point! Will keep u all posted 💖🤗

  • that's my concern with the MRI too but am talking to my GP about another referral

  • Have sent you a private message.

  • hi

    bless u! I am going through pain same as u. I had hysterectomy 10 yrs ago & recently have had problems with pain, bladder problems & bowel too. I sm also being told its unlikely to be endo as endo cannot grow if no hormones. I have not had hrt which adds to there theory! Speak to Linda who also manages Facebook site she has wrote a brilliant paper about endo in post menopause & also gives great advice on how to get through those hoops they like u to jump through. I had to go gp, gynae but now have appointment at bgse centre. hope this helps & hope u get to feel better soon x

  • thank you I have an appointment with my GP to discuss another referral

  • Have u tried all natural Endovan pills? I have heard many different testimonials from the world mine are pre ordered as my best friend who has the same condition as me is using it ! It works for her as well. Btw I begain my me steal cycle as early as 8yrs old in my teen years it was awful so sick I missed my highs school years a lot as the years has gone it's worse I'm at stage four of endometerios. I had exploratory surgery at age 30 and at age 32 had excersion surgery, they took as much out as surgeon can as it's very bad, it's has attached itself to each and every magic organs, intestines, my appendix, my bladder, my kidneys, my rectum, my lower back, my goodness, I'm anemic at same time with being diabetic, and blood clotting disorder, and well this time around I'm mensing for 2 months now, not agreed to have a hystromectomy at current age of 40, never was able to conceive children 😕 And I'm so ready and interested to try Endovan pills because I'm emotionally drained mentally and physically. I heard these pills take care and shrink or cure endometerios, fibroids, cysts, etc. Give it a whirl n see. I'm in Canada so I would need to order them via USA funds it's a bit pricy but why not n try it and let's put down the results here and keep trading info within ourselves . In my case I will be taking two pills twice a day for one month then wean myself down to two pills once a day. Good luck 👍🏻

  • Hi Gaily

    What b s .

    You could have it all over your insides

    Intestines , other ovary , bladder

    Who does he think he is ?

    If he says

    " not likely @

    Ask him to put that in writing

    The guy obviously does not know a thing about endo

    Don't let him touch you


    Don't let him touch you

    Go to a specialty clinic it may mean more hoops and I know your tired , we should not have to be jumping anything in your shape




    Talk to head of department

    Tell them if it was maybe their bowel would they be so free to dismiss it ?

    I was told same thing for four years.

    Also YES IT IS absolutely very very possible to have endo after even a full hysterectomy .

    That I found out early on and decided I'd keep my organs thank you very much .

    Research it you will see how possible it is.

    You will get a lot of answers here to

    Good luck

    It's not over till it's over you may be in for the fight of your life but so what . Nobody or dr should be saying such stupid things

    I read a study once that said a reg OBGYN is pretty much thru with you past childbearing years and past the surgery you had some feel they have got all the money they are going to get ,,,

    I'm sorry I'm being down on doctors

    I'm sure somewhere on the planet there are some good ones .

    But this kind of stuff like you are going thru pisses me off so much .


    Endo pain after your organs are removed

    You will see you are not alone

    I opted to fight it on our

    Went thru early menopause with my organs still inside me

    I'm pain free now

  • thank you so much for your words

    I have an appointment with my GP to discuss another referral ... fingers crossed.

  • Watch this space as I'm asking my GP for a referral to the endometriosis centre tomorrow ☺☺☺

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