Endometriosis sufferer for over 20 years. Have had the hysteresctomy, the ovaries out over three years ago now in pain on my right side

Started to feel poorly around two three months ago getting pains in my back so severe that I went to A&E had pleurisy then on antibiotics. This cleared up but still had the pain in my back. Had an MRI nothing showed up. Have always had the pain in groin right side and a pain up inside, a feeling of pressure pushing down. Feeling very tired now sleeping more and more. My poor husband said he has not spoken to me in two days as I have come in from work and have gone straight to bed my twins Miracles see me in bed now a lot.

As mentioned earlier have suffered for years lots of laps severe Endo stage 4 hysterectomy, ovaries removed, thinking there should be nothing left. Last op had a blood transfusion after I was bleeding internally had a laparotomy where ovaries where removed. Now on HRT, Premerin have put 3 or four stone on, on ant depression tablets and feel really low. At 38years feel like an old woman only for my twins and a wonderful husband don’t know what I would do.

Any suggestions would really appreciate it it’s been a long time since I have been on the site hope your all well

Kindest regards


12 Replies

  • Yes, I too have had endo for many many years which was finally picked up about 13 years ago in a fallopian tube (which was removed), then it went on to damage another (which was removed),

    Previously I had an ectopic and years of investigations and surgeries went on from then on, and at different hospitals with different Gynes. I had several ultrasounds, laps and hystereoscopies which in 2007 picked up extensive endo and adhesions adhering fallopian tube stump to bowel and ovary to bowel on the other side and it had moved into my stomach round belly button. It then removed but due to proximity to bowel and endo/adhesions in stomach, I am of the opinion that some remained as initially after op I was pain free for the first time in years, I was elated but then pain crept back. Tried Mirena, Tried Zoladex and Hrt, Tried Progestrone and lots and lots of medication but despite all that I like you get right sided pain (although strangely, the majority of endo and adhesions where found left side but some in right). I can only describe the pain as ongoing with some fluctuation in intensity, pinching (especially when I sit or eat), can't bear tight waistbands, hip and sometimes leg pain (right sided) and low back pain and worsening aches and stiffness in body, bowel problems galore. Can't hold on to urine, even a little actually hurts and crushing fatigue. Does that sound similar? Of course every case is different depending where endo and adhesions are. Reading your post, I could not help but wonder if scar tissue is some of your problem as it is mine. Being peri menopausal (no periods for months) and having tried Zoladex which didn't work for me, Gyne now thinks adhesions could be responsible for my chronic pain. Where you have had various (often big surgeries) which are known to worsen scar tissue problems with each surgery. It is more than possible new adhesions have formed on traumatized areas possibly adhering to adjacent organs and causing the pushing or pulling/pinching pain. Also nerve pain can be an issue if you have glue like scar tissue there. The Gyne wasn't sure if my ongoing problems where muscular Skeletal and indicated he would not rule out a radical hysterectomy if things did not improve. Yet at the same time, he warned me about risk of surgery causing more adhesions as did my Gp. It is so difficult, according to a Endo Specialist Gyne who gave a talk at an Endo Support meeting, hysterectomies are not always the answer and success is often down to complete and utter removal of every single trace of endo and adhesions (often hidden and missed by some surgeons) and often a bowel surgeon will be on hand alongside Gyne to perform bowel ressection in complicated cases. I have become frozen with fear at the thought of more surgery and maybe major surgery (depending on what they stumble upon) and serious risk of more adhesions. The next step would be to remove ovaries, I have no kids (partly due to my condition and largely due to luckily not being maternal) but it is still not a decision to be taken lightly.

    I guess removing ovaries causes a sharp drop in oestrogen levels and must be a very difficult time for any woman, a real helta skelta! You poor thing, sounds like you are going through the mill.

    My thoughts are with you. I know all about right sided pain that won't go away, it wears you down and has definitely turned me into a bit of a recluse. Thankfully, you have your family around you

    and hopefully they are supportive, although I also know how difficult it is to make someone fully understand something they can't actually see yet is so disabling. Have you joined a local Endo Support Group?

  • Thank you for your reply . Agree with you that it could be the scar tissue. and maybe if I stop the hrt it may stop feeding any endo. there is no endo support group in my area, would not feel confident in telling people how i'm feelin face to face as there is people worse off than me and I should be counting my blessingsxx

  • Hi there just thought to mention that when I had my hysterectomy it was not too bad however when the ovaries where taken out that was when things got worse. Try if you can to leave the ovaries in as long as possible. My consultant said had to take them out as I was bleeding this was never an option. Thank you agin so much fro your indepth reply xxxx

  • I'm 46, no womb or ovaries had endo for years. Stopped HRT in January after taking it for 4 years for several reasons and the endo hit me with a force. On my Scar tissue same symptoms as above bowel trouble, can't hold urine. Pinching sensations various areas, pain in back sooo severe. Hip pains, joint ache and as per above huge fatigue, I sleep but feel like I haven't exhausted. Just had 3 months off as I'm back at work now. By the way a scan won't show the endo only a larascoptomy good luck ladies ;0)

  • Thank you so much for your reply. I too have the bowel trouble and cant hold urine fartoo long either no running or walking fast . Believe if I stop the HRT then it could stop feeding the endo if it is there.my specialist is off at the moment so will have to try when he is up and going again. I am exhausted with this condition have had pain free for three years so am lucky.

  • Hi all

    hope you are feeling to tired today x I to have had a hysterectomy at the age of 28 now 48 I had endo as well. I to have had the same problems as well I am on HRT but I am also on tables to help me open my bowels but I have had test for arteritis and I have a inflammatory arteritis (painful joints) and weight gain but change my HRT has helped and diet to bring this down.

    I think the problems is that because we are young the doctors forget we are going through the change so we suffer with things before are time.

    Like taking extra vitamins will help. But also being on antidepressant when you don't need them will make you worse as it may down to the HRT you are on that you feel depressed. so next time you are at the doctor's get them to give you a full work up or go to a well women clinic hope this helps

  • Hi there thank you for your reply yes maybe a change on HRT or more vitamins a change of diet and more exercise would help just feel draind all the time . Husband has fixed my bike so will give that a try have started walking againxx

  • Your welcome, I am in pain a lot of the time. All the symptoms etc but I thought to myself there always someone worse off than myself, I've packed up smoking & I'm eating very healthily and doing plenty of excersize. Honestly it helps, at least it gives me a good nights sleep. All we can do is try and live our lives the best we can, I chose to fight and it's bloody hard but I feel better mood wise. Good luck ladies I understand your pain. Xxx

  • Hi Billyfluff

    Glad to help I know everyone is different and some things work and some don't

    just do it a bit at a time and if things still not right then just keep on at your doctors or change to one that will help you can go into the surgeries and ask if they have a doctor that deals with

    menopause. My last doctor always asked me when my last period was or if I was pregnant so I change doctors they have done more for me in the last 6 months then my doctors


  • try taking menopace vitamins from boots x

  • menopace. diet and exercise do help. ive got endo and suffered for twenty five years im struggling but dnt want hrt. im exausted because of flushes only bn.on.menopace a mnth but helps with crying x

  • What menopace do you take does it effect endo and hrt

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