Anybody experienced this....

[Sunset-lady]

I went in for my hysterectomy yesterday. I have fibroids which are causing really bad flooding. I had a large one removed in January but now I have 5. I can't have an ablation and they tried to fit the coil and failed so a hysterectomy was offered and I took it. They put me under anaesthetic, went in and found that my cervix was fused to my bowel. They therefore abandoned the operation as it was too dangerous. My surgeon said he thinks it's endometriosis adhesions and he couldn't even see my left ovary. I don't know where to go next with this. I always suspected I had endometriosis but I was dismissed by so many doctors (I'm 50). Strangely they didn't find any other endometriosis. Has anyone else experienced this? What was the outcome? I'm in the North East of England. I'm really worried. They have offered me zoladex but I know thus will shut down my ovaries and I don't think I could handle surgical menopause symptoms on top of this. Any advice welcome - I'm new here.

[MyStar86]

so sorry to hear this but if you have to have the Zoladex you can have added hrt to ease the menopause symptoms. Sometimes they put people on Zoladex to ease the pain whilst waiting for surgery as it sounds like you will need surgery with a bowel surgeon and an endometriosis specialist to complete the surgery. Do you have a secretary contact that you can call or email to ask what is happening next? Ask if you have been put on a waiting list for further surgery. Sending big hugs

[Sunset-lady in reply to MyStar86]

Thank you! I'll definitely take all the hugs today. Xxx

[Cleo45]

Hi Sunset Lady. I am incredibly sorry to hear all of the trouble you have went through. I have endometriosis too (33 years old) and have had 3 surgeries. After my 3rd the surgeon advised that bowel was fused to my womb but there wasn't any deep infiltrating lesions so he just managed to detatch it and no more. I had an MRI scan in June and unfortunately it has happened again and is worse this time. I think the reason they wouldn't have went through with your surgery is that they would need a bowel specialist in for it too and as they didn't explain the risks to you they didn't go ahead with it. I have been advised if I go through with another surgery that I will potentially need a stoma bag (which would be reversible after time) so I would imagine if you get a follow up they may advise you can go through with the surgery but there are those certain risks associated with it. As they didn't go over the risks and have your consent with your bowel, they may have thought it was better to halt the surgery and discuss this first. Have you had any indications of a follow up with the consultant yet? Take care x

[Sunset-lady in reply to Cleo45]

Thanks for replying and I've rang the surgeon so am waiting for him to return my call.

[GreenViolin]

Sounds like quite a traumatic experience you'd had, so I really feel for you. If you haven't done so already, it might be worth checking how thoroughly the surgeon looked for evidence of other endometriosis during your surgery. If you haven't had a MRI, it's worth requesting that as while it doesn't prove it's definitively endo, it can give a good indication of where this might be.

I don't know if you're being dealt with at a specialist endometriosis centre, but if there is one near you, you could ask to be referred there. They tend to have close relationships with other disciplines in order to carry out more complex surgery. One of my ovaries, cervix, bowel and rectum are adhered to each other in a fairly complex way, and the surgery I'm currently waiting for it to try to disengage everything (I've declined a hysterectomy).

If there's no specialist endo centre, then you can at least seek a second opinion from a different gynaecologist.

[Sunset-lady in reply to GreenViolin]

Thanks so much for replying. I think my situation is similar to yours. I think it's going to require further surgery. I have rang to find out next steps and am waiting for them to get back to me. I'm really fed up as I had no idea about this. Can I ask you what symptoms you've got? Thanks again.

[GreenViolin in reply to Sunset-lady]

My current symptoms are excruciating pain with bloating, nausea and some constipation. Painful sex is a problem, but I'm not having any as it's just too much! The other symptoms I used to have (heavy, long periods often lasting more than 28 days) are effectively managed by my Mirena coil which has completely stopped my periods, which I see as a real blessing.

[Sunset-lady in reply to GreenViolin]

Thanks for this. I used to have painful srx bit then it went away. My bowels are all over the place but I was told this was IBS. I don't have any other pain really. I'm so sorry you are suffering. I would have lived the coil but it won't sit in my cervix

[GreenViolin in reply to Sunset-lady]

I’ve also been told I have IBS. I know I can react to certain foods, but I’m still not sure whether the supposed IBS is actually related to the Endo. Neither specialism seemed to know the answer when I asked my consultants!

[Sunset-lady in reply to GreenViolin]

I am going to investigate what happens next thank you for replying. I had no idea about this.

[Username12345678]

hello, so sorry to hear this. It must be a difficult time and a shock for you. I have t experienced what you have been through but I have experience of medical menopause via the Prostap injections. For me it was a good experience and gave me a lot of relief from my symptoms for a few years. The hrt eradicated most of the menopause symptoms too. I’m also in the North East, had a hysterectomy last year and can highly recommend my hospital and consultant/surgeon. Happy to share those details with you. DM me if you’d like them or have any other questions x

[Sunset-lady in reply to Username12345678]

Thank you for this. To be honest I'm just trying to get my head around the problems with my bowel being fused to my cervix and I've stopped thinking about the injection. I can't deal with the possible mental side effects of surgo menopause at the moment. However, I'm not on my period today and I'm ok - it could be a different story when I end up in A&E again through hemorrhaging and need iron infusions because of anaemia.