Can endo become active again 10 years after total abdominal hysterectomy and bilateral salpingo-oophorectomy?

[Trike3]

I’m new here & this is post number one.

In 2010 I was diagnosed with stage 4 endometriosis, following a laparoscopic attempt to remove both ovaries. Only one could be removed at the time as my second one was not visible due to extensive endo. Following a horrendous time on Zolodex, to reduce the bleeding endo, I had a total, abdominal hysterectomy & unilateral, salpingo-oophorectomy ( remaining ovary with Fallopian tube removed ) A colorectal surgeon was also involved in my surgery due to bowel involvement. Following a troublesome recovery, wound issues, I have been pain free.

At the end of May 2020, I was rushed in to A&E with acute, severe, left lower abdominal pain. After a bucket full of analgesics, I was diagnosed with “ constipation (not) and a fever (38.8) of unknown origin. I was advised to go home, and I would feel significantly better once I’d had my bowels open I was also instructed to take Movicol to get the whole process going. 8 sachets later and my bowel habit remained it’s normal self, I was not constipated at all. I have now been suffering with right sided abdominal pain, at times similar to old endo pain, extending down from under my rib cage down to my appendix scar. Other than continuing to spike a temperature daily, right sided pain and now weight loss, I have no other symptoms of note.

Does anyone know, or can anyone advise me if the pain I’m experiencing could possibly be, reactivated endometriosis? I have never taken HRT due to a strong family history of ovarian cancer, so no estrogen to trigger activity.

I’ve been referred to both colorectal & gynaecology consultants, but in this time of COVID there are inevitable delays here. Sorry, it’s a bit of a long post.

Keep safe X

[NW248]

I don't have a direct answer to your question. But try pushing your GP to see if you can get an MRI. Maybe you can get a phone consultation with a gynae and get referred for one that way. Scans are a little more distanced than a face-to-face consultation so that may be more of a possibility. (My Mum got referred for a CT scan with no face-to-face consultation quite recently).

An MRI would probably show up any endo, but could also show up other things that might be the problem.

There are some foods that have oestrogen like compounds (soya being the main one) and candida generates oestrogen type compunctions too. I did a post about candida and endo so look that up.

[Trike3 in reply to NW248]

Many thanks for that, I’ll go check it out.

[Moon_maiden]

Scan is a great idea, I had both MRI and CT colonoscopy during covid.

I have read that if it’s not all taken out, it can return. When I saw the consultant this week re hysterectomy and endo, I made the point to ask that he’s going to check everywhere for endo and get rid as I don’t want it to return.

Check to see if they’ve received your referrals and if you’re able ask about short notice cancellations. GP can also refer for scans. I had to micro manage during covid, you may have to work a bit to get them.

[Trike3 in reply to Moon_maiden]

Thanks MM. Your suggestions all seem very sensible, unfortunately for me my medical practice of many years, merged with another in the city. I’ve out lasted the 3 GP’s who knew me so well, they retired and the practice has now morphed into a huge super hub. I don’t know any of the GP’s and trying to get through to actually speak to someone is a challenge in its self, all for a 7 minute telephone consult. I’ll try in a while when I’ve had a nap, pain had me up at 03.00 this morning so now have warm heat pad on tum, paracetamol and tapentadol down the hatch followed by raspberry jelly. Speak soon. T3 x

[Moon_maiden in reply to Trike3]

I know how you feel. This was an issue last year. There are several practices based in the same building and they joined to make a same day service. The surgery I’m with kept sending me there and saw GP’s from different practices. One stupid women told me I should get used to UTI and kidney infections and offered HRT, said I still had periods 🙄

Once I had a diagnosis I made it quite clear I wouldn’t not use the service anymore. I tend to use the online form, gets a much better response as they can’t ignore it. If you do, with a bit of luck someone who has a bit more gynae knowledge will respond and then you know who to speak to in the future. I’m still considering a complaint about that particular one.

Hope you feel a bit better when you wake up. Let us know how you get on.

[Trike3 in reply to Moon_maiden]

Hello MM. Done napping,

My practice has started to use something called DoctorLink. It is totally useless, I registered twice and answered the 54 questions re symptoms Etc twice, so 108 questions later, I was advised to attend A&E. they have a telephone appointment system that requires a handbook of instructions to use, so not easy and don’t get me started on trying to actually see/speak to a GP. All online appointments have been suspended until further notice.

Did enjoy my nap and appreciate you replying, early night now and hope to sleep through as totally exhausted. X

[Moon_maiden in reply to Trike3]

Hope you sleep well tonight.

I make sure I reduce certain questions like pain, if I mark anything higher than a five or six it tells me to go to A&E. I add a comment that these parts don’t work. 🙄 also completed the feedback form several times about it.

Hope you feel better tomorrow