1 year Post Hysterectomy

[Random_Brunette]

I am just over 1 year post hysterectomy (everything removed) due to cysts, fibroids and stage 4 endometriosis.

I had a good 6 month run of feeling better, only issue being exhausted all the time. From around January the old symptoms started making their way back which I found a little surprising as it's all been taken out and I've been experiencing only what I can compare to period pains.

Then the bowel issues started and they are getting progressively worse. There is not one food group I can pin it to as anything can set it off and that along with the pains is beginning to make me miserable and having an impact on day to day eating (and what socialising we can do at the moment).

I raised it with my GP who then flagged it to my consultant. She asked me to have an Ultrasound and she would then see me in clinic. I have had my Ultrasound and it turns out I have a slightly enlarged liver which while my diet isn't that bad I do acknowledge that I am a little overweight having not really been able to exercise easily in recent years. She said that was probably the cause and that there was nothing else she could see that would be a problem. She also said that endo is not visible on a scan (which I knew). I did mention that I had recently found out some further details about my surgery and that my pouch of Douglas has been pretty much obliterated my the endo. I was told if that was the case it is likely still in my bowel.

Fast forward 2 weeks and I have just had a letter from my gynaecology Consultant basically putting it all on my liver, asking me to get more bloods done despite the bloods being done in January, that covered liver function, being perfectly fine and that she would be referring me to a specialist in case there was an issue with my liver. No mention or acknowledgement of my bowel issues or the issues I still have despite being on HRT.

I should highlight that before my surgery she did say it was likely in my bowel and if needed a bowel surgeon may be present. Nothing was said after my surgery so I assumed that all was fine. I only found out about the damage down to the "pouch" a few months ago when I saw my GP for the first time and it was in my discharge info to them.

I'm sorry for the long rant, clearly a bit annoyed at being dismissed and don't know what to do next? I have in the last month started focusing on exercise and diet even more so I have no worries with my liver and would think if it was anything serious (and the consultant herself said it isn't in the letter) it would have shown in my bloods in January.

I just feel that she's just passed me off to someone else, with a seemingly different issue, without a resolution to the issue I presented with in the first place! While I knew hysterectomy was not the answer to everything I didn't realise I would be back to square 1 so soon!

[BetterDayzAhead]

Ask the GP to do you a Consultant Select to a UK BSGE Surgeon, (it's an electronic transfer they can do easily if you are in mainland Britain) who is confident at looking at bowel Endometriosis. You could seek a dynamic scan with Endometriosis protocol. PM me if you wish to have more info.

Good Luck

Katie

[Lindle]

As you had stage 4 you should have been referred to a tertiary endo centre as soon as this was known. If your lap was in secondary care in general gynaecology they shouldn't have even attempted it. Referral is direct to the centre and your GP needs to prepare a case and send a letter with copies of letters/reports confirming stage 4. Ultrasound shows deep endo very well but only when done by a specialist in that area of imaging. Feel free to DM if you want more info on how to refer.