feeling lost & hopeless

[Comingbackasaman79]

Since I was 14 I’ve always had irregular and extremely heavy periods. I was diagnosed with PCOS then Endometriosis then Adenomyosis. I begged for a full hysterectomy since 2009. Finally had it completed in 2020. However, the pain is still there in the same places. I’ve been to the hospital multiple times with it and no one will listen to me. I keep getting told there’s nothing there. The pain is real. It’s probably IBS or similar. How do I get them to listen to me? I’m feeling so alone. Fed up of always being in pain and can’t see a way out anymore

[Lindle]

Unfortunately a hysterectomy isn't a cure for endo and symptoms often continue especially if they were not period related. Did you have your ovaries removed as well and if so are you on HRT and which type?

Do you know what stage/severity your endo is/was when you have had scans/laps in the past and did you have excision? Also did you have all known endo excised at the time of the hysterectomy?

[Comingbackasaman79 in reply to Lindle]

Yes I had my ovaries removed. I had stage 4 endo. No excisions on bowel when I had my total hysterectomy.

[Lindle in reply to Comingbackasaman79]

I assume it was in specialist endo centre. The endo will still be there and likely progressing as it feeds itself without ovaries. Have you been back in touch with them for an expert scan?

[K2023]

Hi, it’s a tough situation to be in when you feel like they are not listening,but do not give up .It could be adhesions they come from any abdomen/ pelvic operations hysterectomies laparoscopies, caesareans they all cause them.I had 4 Laparoscopies and when pain came last Autumn I just put it down to Endo again and Adenyomosis but it was mostly adhesions and it causes a lot of pain .Don’t let them fob you off go back to you’re GP mention adhesions and this site ,I couldn’t get anywhere recently with my consultant and I was getting blanked and I mentioned this website and honestly his attitude sharp changed I even got an apology .Also mention nerve pain,my consultant said one of my symptoms was probably that,not very helpful of course ,but after the next operation if it’s still there then I am going to push for nerve pain treatment .don’t give up keep going back I know how tiring and hopeless it can make you feel ,but you are not alone and you deserve to be out of pain.I hope you are ok and you use this site to recharge you’re energy so you feel like you can go back to them and say look you need to Hear what I’m saying.big hugs take care .

[Comingbackasaman79 in reply to K2023]

Thank you xx

[BloomingMarvellous]

It’s worth considering working on the pain with specialist physio sessions with an expert in pelvic core recovery. Adhesions, surgery spasming habitually with the pain and the nerve rich fibre of endo disease makes the whole area disfunction badly over the years. It’s not the whole story but a big part of pain control, balancing hormones and mobility. DM if you’d like a few links. It really altered things for me.