Adenomyosis: bladder pain frequency and feeling un emptied always. Anyone else?

[Fipp]

Hi all, i would really appreciate any reply , seems the endo forum gets loads but no so in adeno forum sadly ...

i am feeling pretty fed up with all my conditions after decades of going round in circles , pain, flareups which have impacted my life and mh:

I have adenomyosis- no endo found with endo specialist lap, most like adeno confirmed also after trans vag initially . Hysterectomy was offered but i asked to think about it and now near 2 years on from lap am having trouble trying to get another decent conversation with gynae again.

I am in menopause at mid 50's .No bleeds anymore but still:

- side rib pain/wind/bladder frequency up to 20 x /day ( cant seem to empty fully and feel like im always needing to go feeling), Feeling like my kidney is sore alot

-abdominal soreness and bloating ( often it feels like i have been punched in the stomach, have a uti , Fatigue, migraines all fibro stuff ( im told)...which i question often in terms of have i really got fibro ( another condition that never seems to be taken seriously)

..... been batted between urology refusing to see me and referring me back to gynae who offer no solution except hyster. But i wanted to discuss this in detail with them to understand any damage to my bladder if i go ahead and not sure it will help as many say makes no difference.

I just need help to understand my condition and the option with someone who has expertise - impossible it seems. I often feel like my symptoms are not bad enough anymore now i dont bleed.

I wonder if i am gas lighting myself now , i feel shame upset for always feeling under pa and sore ( but maybe not bad enough) It seems when you are in menopause you are not important enoufgh anymore because you are not trying to have a baby.

Any kind words or experiences you have had that are similar or include bladder symptoms would be really appreciated! Thank you so much in advance x

Also this community doesnt seem to ahve the feauture to add tags other than lap or hyster?

[Eclecticmusicmum]

Please keep pushing to get seen, just because you are menopausal doesn’t mean they should just write you off! My mum suffered for years with her periods etc and it was until she had an emergency hysterectomy 14 years ago that her adenomyosis was discovered and by that point she had to have everything out, a full pelvic floor reconstruction and a cyst the size of a babies head removed. I don’t want you to end up in that situation. I’ve seen her suffer in silence for so long and I hate to think of another women doing it. Keep on at your g.p, see someone else if they’re not listening to you. You know your own body better than anyone else.

Just to add, I suffer with bladder problems with my adenomyosis, urinary retention, frequent uti’s and constantly feeling full. I’ve got a cystoscopy on Friday to see if my endo/aden are causing the problems (which the urologist thinks is the case)

[Fipp in reply to Eclecticmusicmum]

Dear Eclecticmusicmum Thank you so much for your reply...i really appreciate that you have taken this time to reply as i had given up on receiving any reply since braving myself to even write a post!

Firstly i love your name and hope (like myself ), that music brings soothing to you at times when you feel able to be your music and enjoy.

Thank you so much for your encouragement to 'push on' . Honestly after 2 weeks of another bladder/ibs or gynae flare up ( as i am struggling to discern) i am feeling pretty hopeless. So to receive your reply really cheered me this morning x

i am so sorry to hear about how your poor mum suffered and hope she has a better quality of life now after her hysterctomy and all else?

Also so sorry to hear that you are also suffering and by sounds in similar ways to myself with the bladder issues. I am not sure what a cytoscopy is but i will look it up. Perhaps this is something i should request from my gp if i can get my bladder diary together ( which i suggested). I have given up logging for now as my symptoms have decreased a little here in last 5 days and then imagine its all in my head again! It seems that when i am bloated my bladder plays up and anything can set it off i guess. Stress, what i eat or not eating as feeling too full and bloated and then the dreading cycle of over- eating ( emotional binging) and not staying with good habits! That said im pretty good i feel in terms of most days in the week.

Can i ask if your bladder symptoms are constant or do they co incide with anything for you? My GP has said the urologist feels i should be referred back to gynae and it was myself who suggested bladder diary to GP to send to them ...she said yes this would be good and they may consider me again. But as it is not constant and i had been well for several months since my lap ( with less flare ups and no endo seen) , i gave up again.

TBH i am not coping well with energies to navigate my health and push in ways that my head wants me too! I think because i have had to advocate for so long now in so many ways and have experienced so much trauma around child loss , caring for a mother with demetia and much else. We tend to forget purselves hey - when we are empaths!

I also feel that adenomyosis receives less responce and is less clear than endo ( in terms of awareness and i just see below a post on uterine adenomyosis...which i will look at next...i had no idea existed.

Anyway apologies for my scrambled head and waffel ...really appreciate your reply musicmum and wishing you a gentle and good day (:

[Fipp in reply to Fipp]

also best of luck with your cystoscopy on friday.. do pop back and let me know how you are if you feel x