So lost, can anyone help?

Dear group, I have read many of your posts and think the support you offer one another is amazing. I would like to take the opportunity to ask you about my case and see if you are able to help as at present I feel quite lost as to the right path to take. I will try and be as brief as possible but am afraid it is a feather long post. I am 40 years old an have been lucky to have 2 children. After suffering most of my adult life with heavy periods, mid cycle pains and one burst ovarian cyst I had been on every birth control pill etc there was to try and then had a coil put in around 3 years ago. I was only diagnosed with endometriosis 2 years ago when admitted to hospital with suspected appendicitis. After the operation I was told I had extensive endometriosis and may need further treatment in the future . My discharge letter stated: abdominal pain likely secondary to endometriosis, areas of endometriosis within the wall of the appendix showing both glandular tissue and stroma. Right ovary appears to be adhered to the bowel and sits in the pod.

My pain continued and began to become more severe on a daily basis, main symptoms are back pain and severe pelvic pain so after a bit of a fight my gp referred me back to gynae who eventually performed a lap to look see in May last year. Unfortunately since my gp had tried to help and put me on the pill in conjunction with my mirena coil to ease my pain and symptoms it had held back the endometriosis so that it was only found on both iliac fossa, this was burnt off by diathermy and I was told they divided some adhesions on my peritoneum. My discharge letter stated:

Bands of one tap adhesions to anterior abdo wall

Muscular adhesions of uterus to anterior abdominal wall, bladder not seen due to thickness of adhesions. Endometriotic deposits on anterior abdo wall in both iliac fossae. Adhesions of tubes to bowel, old endometriosis scarring at sit of adhesions.

After my op I was put into six months of prostap to see how my body felt about menopause, it helped considerably with the very severe pains, however I still was suffering daily symptoms. My consultant has suggested a total hysterectomy would help in my case as prostap helped and this along with removal of adhesions would in his opinion give me a much better quality of life. I guess my question is first is my endometriosis classed as severe? No one has ever said. I know that bsge centres should work on severe but if mine is only classed as mild or moderate would my gynae along with the bowel surgeon be good enough? Secondly he said that he feels much of my pain is now coming from my adhesions so does this mean having these organs removed will free me of that pain? I am at a bsge recognised hospital but under a regular gynae, 20!weeks into a 40 week wait for hysterectomy. I thank you for taking the time to read this message and would appreciate any response or advice you could give me.


3 Replies

  • I am so sorry to hear you have been suffering so much. Based on what you have told me (and I am NO expert) your endo sounds severe enough to have to be treated by a BSGE specialist. As I understand it, if it's on any other organs other than your reproductive organs, it's severe. I also don't think that a hysterectomy will help you, as that would not take care of the endo on your bowel and abdominal wall.

    I am in a similar position to you, I have never been told what stage endo I have but it's on my utetosactal ligaments and the Pouch of Douglas so I have asked for a referral to a BSGE clinic.

  • Thank u so much for the reply, I think I need to make an appointment with my gp to see about a referral then, I hope all goes well for u when u get to see a specialist x

  • Hi , you initially say your endo was found in pod , ovary stuck to bowel etc. Then you had lap with general gynaecologist and was told differently.

    This maybe because general gynaecologists tend to miss endo in places like pod as they either don't look past reproductive organs or don't recognise all presentations of endo.

    You say that you're at a BSGE centre but under general gynaecologist.

    Find out who the BSGE consultant is then ask GP for a referral to them.

    My guess is that you have severe endo and this should only be treated by a specialist. This is nhs guidelines.

    I would also suggest you hold off on the hysterectomy until you've seen a specialist as you may not need one.

    Good luck.

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