Hysterectomy 4 years ago and pain - need some support

[emma422]

Hi

Can anyone help me hysterectomy 4 years ago today have got right ovary.

Approx 1 year ago admitted with excessive pain endometriosis all over pelvis endometrioma on right ovary

They say I have so much nerve damage I get regular UTI I am on prostap, tibilone, codeine, pregablin about to start sertraline.

I feel like I am drowning gyna appointment tomorrow what do I say?

Thanks

[Alaine1 Administrator]

Hi Emma422,

I’m so sorry to hear that you’re in so much pain. Have you got a pain management appt? It might be worth while if you are under one asking for a review even as a telephone appt. if you haven’t got a pain management specialist I’d definitely get your GP to refer you even if you had been previously discharged by them. Endometriosis is a sneaky disease and even though a hysterectomy can be curative for some women it produces disappointing results in the majority of women where the endometriosis can return. Many do have a hysterectomy as they also have adenomyosis present. One of the main things that is jumping out is that it could be adhesions causing your pain currently. One of the things you could ask for is an MRI with contrast. If the adhesions are dense they could be sticking organs together or pulling them out of their natural position in the pelvis. In that case it might be worth asking for a laparoscopy. The jury is out for minimal adhesions as many specialists including pain specialists say they don’t cause pain and believe that by operating they could cause the adhesions to come back more aggressively. But adhesions are very personal as some women have a tendency to produce dense adhesions whilst others don’t. It’s one of the reasons too much surgery can be a bad thing as eventually it becomes too dangerous to operate.

But for your appt tmw:-

1) Definitely be honest about your level of pain, if it’s disabling say so. We do have a tendency to feel bad for say we have severe pain. Say what you have tried including any over the counter treatments natural or medicine based, exercise, Pilates etc

2) Ask if an MRI with contrast is worth having to rule out another endometrioma, adhesions, endometriosis. But a clear MRI or any other imaging modality doesn’t mean there is no endometriosis present. This can help formulate a long term plan going forward.

3) Ask about a Women’s Health Physiotherapy appt. Every hospital has them but the waiting times pre COVID were very long and the care can be a bit hit and miss. You can self refer privately if that’s an option but make sure they offer trigger point release as some of the pain my be due to pelvic floor dysfunction. This can cause agonising pain as I know from personal experience. It also leads many women to believe that endometriosis has returned when it might not have ( men can also benefit from this type of physiotherapy). Might be worth exploring or at least asking about.

4) Ask if anything else might be causing the pain. Could it be coming from the bladder as it lies in close proximity to the where the uterus would be. Many women can’t tell the difference between endometriosis and painful bladder syndrome. I was able to tell where my pain was coming from and for me the bladder pain was very different from the adenomyosis and endometriosis pain. If it could be painful bladder pain there are lots that can be done. Not everyone has severe symptoms that can’t be controlled so don’t be frightened by posts on social media.

5) Could your pain be from a combination of conditions- endometriosis/adhesions returned alongside pelvic floor dysfunction? Ask this question.

6) If you are having regular UTI even with nerve damage this should be investigated as it might explain a source of your pain. Definitely get your GP to refer you to a urologist who will likely do routine blood tests and urine cultures before a cystoscopy. This is usually done as an outpatient appt and uses the flexible cystoscope not the rigid one they use under a GA which is a lot more pain. I’ve had both and would always recommend the outpatient one. It takes less than 10 minutes.

Consultants often like patients to interact with their appts. View it as a partnership where you have just as much power to make decisions. The plan must work for you too. If you aren’t happy with anything say so. I know it can be hard to do this but it keeps things working for your benefit.

Definitely write a list of questions/points to make especially point 1 I’ve mentioned.

Book GP appt to discuss urology referral. You could even say your not happy with the amount of UTIs you have and would like a consultation with a urologist even if it’s for management.

I really hope this helps you and your appt goes well tomorrow. Will you update us on here?

[emma422 in reply to Alaine1]

Thanks so much this has been a great help I will try and write down as much as I can.I had the hysterectomy for adenomyosis and have had 6 laparoscopic surgeries already for Endo but just feel stuck

Really appreciate your reply xx

[Alaine1 Administrator in reply to emma422]

That’s ok always happy to help where I can. You can always do a screenshot of it on your phone and use that to refer to during your appt?