post hysterectomy endo

[Sickofthisshit]

I’m 44. Have had full hysterectomy with bilateral ovary removal. Have endometriosis and adenymosis. Still having endo pain symptoms. Have been told it’s not a gynae issue. Pelvic nerve pain is severe. There is no endo specialist in Northern Ireland. I’ve had several surgeries including 2organs removed unnecessarily. Is there anyone based in Northern Ireland with similar issues? Any advice would be appreciated

[Debsturbo]

hiya!! I’m in Northern Ireland in the North West and in exactly the same position! I had a full hysterectomy about 5 years ago with endo and adeno. I’m still in severe pain. Like u I’ve been told it can’t be gynae but I’m on the waiting list to see them again anyway. I’ve had to leave my work with the pain. The gp gave me pregabablin thinking it was nerve pain but it made no difference. My weight ballooned on it and it’s so hard to come off. We have so few gynaecologists here and I think only one maybe 2 who are endo specialists.

[Sickofthisshit in reply to Debsturbo]

I’m so sorry to hear you are in the same situation. I was referred to gynae and saw a private consultant who said he didn’t think it was endo. Then he went on to say that there could be some ovarian tissue left there and wanted me to go on prostrap again! Yet he discharged me! It’s beyond ridiculous. Do you know the names of the endo specialists here in Northern Ireland? I’ve heard altnagalvin hospital has an endo centre but there dosent seem to be much information about it. I’m not in that catchment area either

[Debsturbo in reply to Sickofthisshit]

I went to a private gynae as well and he told me there is no way I can have endo after a hysterectomy. Which is wrong. It’s altnagelvin I attend and there is an endo nurse but that’s it. The surgeon who did my surgery was able to check the results and make sure the ovaries she removed were whole nothing was left. I’m waiting to see Dr Moohan who I think specialises in endometriosis We are really badly done by in Northern Ireland as far gynae and endo is concerned.

[Sickofthisshit in reply to Debsturbo]

Thankyou for your reply. I really hope you get some answers soon. I will speak to my GP about a referal to altnagalvin

[Sickofthisshit in reply to Debsturbo]

Are you seeing dr Moohan through altnagalvin or privately?

[Debsturbo in reply to Sickofthisshit]

I think he does private consultations in Ballykelly

[Behind_Hazel_Eyes]

Hi! I don't think we are allowed to say consultants names outright on this platform. I am also NI based and you are right, the care for endo is very poor. We have no BSGE centre here, which is crazy! The waiting list on the NHS is insane. I was under the care of the doctor you listed above before being discharged. I have more recently been refered up to Antrim to see Dr. K Jo...son and was told to expect an MRI before Christmas.... still waiting. I have had to go private and see another consultant in Belfast (Dr S McG...an) and will hopefully have an MRI in 2 weeks time. I believe he runs the provisional centre in NI in Belfast, (the one in Londonderry is no longer operating from what I have read!), he also seems to have the right kind of qualifications. I am hoping to be treated privately because getting onto his NHS list may be a bit of nightmare because they don't like moving moving patients between different trusts. Some consultants do seem to have the right kind of qualifications and apear to be members of the BSGE. To be honest I check all of their qualifications before even seeing them. Maybe try these consultants? They all work privately through Kingsbridge. Good luck x

[Sickofthisshit in reply to Behind_Hazel_Eyes]

Thanks. I didn’t realise we weren’t meant to name consultants. I saw a private gynae in kingsbridge but he told me he didn’t think I had endo. Even though I was diagnosed with endo twice in the past through laporoscopy. Also had to have hysterectomy and ovaries removed for to adeno and endometriomas. They seem to think because I’ve had full hysterectomy I cannot still have endo. It’s mind boggling. The care here is absolutely terrible.

[Behind_Hazel_Eyes in reply to Sickofthisshit]

That's mad the consultant didn't think it was endo! Its well known that it can spread to different parts of the body for goodness sake. I think research is increasing showing it may be an autoimmune condition? Because it has a knock on effect on different parts of the body. Other people on this platform have sought help in the mainland, privately. Maybe that could be an option? I think their GP had to refer them. But its mad that we have to pay to get the help we need.

[Sickofthisshit in reply to Behind_Hazel_Eyes]

It’s such a complicated disease with so very little support and care provided. I have had to pay privately in the past to actually get the diagnosis like so many women. I’ve had a recent mri which they said was clear but they also said it cannot be 100% accurate. I will speak to my GP about onward referrals. Thank you so much for your responses. I hope things work out for you

[mrschuckles]

hello, I too had post hysterectomy endo. They removed my organs but left the endo behind. Endo produces its own oestrogen. I had a total peritoneal excision privately.

Go back to surgeon and ash him whether he cut endo out or just removed organs. Ask for a second opinion. Good luck x

[Dogmad6]

I had a hysterectomy and bilateral oophorectomy 20 years ago and I still have endometriosis. I've also had multiple excision surgeries. My endometriosis was widespread and came back. I struggle to believe a so called consultant told you that it couldn't be endometriosis. I'd love to explain a few things to him. Total clown! I wish you lots of luck in finding the correct help. It sounds like it's a dire situation for women with endometriosis in Northern Ireland. XX

[Endo1982]

I am also from Northern Ireland. I had a hysterectomy in September 2022 following a uterine artery bleed. They discovered endometriosis. I’m March this year I had to have a bilateral oophorectomy due to endometriosis cysts and they had to excise further endometriosis but left endometriosis in my diaphragm as they could not remove it. I have had pain since only to be told on numerous occasions that it could not be endometriosis. I was in hospital this week due to excruciating pain which they thought was my appendix. They done a ct only to discover further endometriosis! Something they told me was impossible. I’ve now been referred back to gyne. I was wondering is the endometriosis centre in altnagelvin hospital still open or is there any other endometriosis centre or specialist in Northern Ireland as our care is inferior to the rest of the uk. Is there a provisional endometriosis centre in the matter hospital belfast? Any help would be greatly appreciated. I feel at such a lose to be in all this pain and the Hospital told me they didn’t know what to do with me. Thanks

[Sickofthisshit in reply to Endo1982]

I’m so sorry you are going through this. Unfortunately there dosent seem to be any endo specialist in Northern Ireland. I was referred back to gynae twice after my full hysterectomy and they discharged me both times as they said I don’t fall under their care due to hysterectomy. I asked to be refered to altnagalvin but I don’t live in that area so can’t go there. You could maybe try there?

Can I ask did the ct scan show endo on the diaphragm? I’m convinced I have it there and also on my sciatic nerve

[Endo1982]

thank you for getting back to me sickofthisshit. I can’t seem to find a specialist in Northern Ireland either. I’m not in altnagelvin area either I’m in southern trust but will ask my gp if they can refer me anyway.

To be honest they didn’t go over my recent ct in detail apart from telling me that the ct scan showed deep infiltrating endometriosis and this is only 7 moths post excision. I will ask my gp for my ct report so I can see in detail what it said . A&e told me they didn’t know what to do with me and said they’d refer me back to gyne probably the same gyne that discharged me a few months ago and said that there is no way i could have endo grow back as had hysterectomy and both ovaries removed and on her. This is despite him telling me that he had to leave the endometriosis in my diaphragm as he could not excise it and had to close me up as I’d been under too long and was starting to bleed out then I got sepsis after the operation and spent 5 months on iv antibiotics so in reality I’ve only had 1 month pain free following surgery.

I’m truly sorry your having to go through this too we all deserve so much better . I will let you know if it showed the endometriosis on my ct scan when I find out.

Can I ask are you on hrt? I am and it doesn’t appear to help either.

I also have sciatica and have pelvic, hip, and leg pain from the endometriosis

What are they going to do to help you? It’s a disgrace they have discharged you twice despite there being medical evidence that you can get endometriosis post hysterectomy

[Sickofthisshit in reply to Endo1982]

It sounds like you have been through a really hard time, I hope you are ok?

I’m on hrt, estrogen gel and testosterone gel- had to go private to get that.

I’ve been sent to orthopaedic now for the sciatic like pain. Waiting on spine mri.

They just pass you onto the next consultant wheb they don’t know what else to do.

Can I ask what symptoms you have with the endo on the diaphragm?

[Endo1982]

thanks. Yeah it’s been a lot. It’s just so exhausting and never ending. I’m on estrogen patch and progesterone tablet wondering if I need testosterone too?

Hopefully you don’t have to wait too long on your mri for sciatic pain I had back surgery last October but unfortunately it did not help my sciatica

Unfortunately we are just passed from pillar to post as they don’t know what to do. I really don’t want another surgery after all the complications that have happened but I might have no other choice that even if they decide to do anything at least with the ct scan they can’t say I don’t have new endometriosis

My endo symptoms in my diaphragm are similar to endo pain in pelvis with sharp stabbing pain and shortness of breath from time to time with fits of coughing which will then resolve. I was told if I get a lingering cough or trouble breathing to go to a&e straight away as my lung could collapse. It doesn’t make you feel good about your health in the future it fills me with anxiety

You should maybe try and insist that your gp refer you back to a gynaecologist maybe even see if you can get mri or ct scan of the pelvis. They told me after my ct scan tge other day that an mri might show the endometriosis in more detail

Hope you get the help you need