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[Tigerlily1]

Hello to all the lovely ladies who spend time answering questions and providing support.

I had a hysterectomy in 2003 (with removal of ovaries)and was diagnosed with some vaginal atrophy and a caruncle in October this year.
My symptoms began in August and  are acute cystitis type feelings with awful pain but no infection indicated in the urine alternating with soreness of the vulva area. I have been using Vagifem in varying dosages since October. I thought I had noticed some improvement this last week -8th week - but had terrible pain lasting 12 hours today.

My question is what do you use for pain relief and is there anybody else like me? I have seen a gynaecologist and a urologist. Is the answer just to continue the Vagifem or are there other answers out there please 

[Taz2]

Hi Tigerlily 1.

Sorry to hear about your pain and ongoing problems. At the time of your hysterectomy were you given HRT to replace the oestrogen you would have lost due to ovary removal? I'm not sure how old you are.

Lots of us find that as we go further into meno we need both full HRT as well as Vagifem to counteract the vaginal problems. What treatment have you been given for the caruncle?

You will find lots of support on here.

Taz x 

[CLKD]

Do use the Vagifem for the next 2 weeks every night, not 'as necessary'.   It is essential to keep the vaginal walls as moist as possible which requires a bit of Trial and Error for each of us.  Some ladies find that they need to use Vagifem every night as it is 10 rather than the 25 dose of years ago. 

I take Nurofen as pain relief: it can ease symptoms of cystitis which mimics vaginal atrophy: I take 2 tablets and 90 mins. later another 1 which usually helps any pain/burning down there.  Then 2 tablets every 4 hours and 1 in between when necessary.

You could ring your Pharmacy for advice?

[Tigerlily1]

Hi Taz,
Thank you so much for your reply - just to know there are people out there who have experienced similar symptoms makes me feel better about my situation.
I am 63 and opted not to take HRT at the time of the hysterectomy which of course I regret now. Clear advice from either my GP or consultant was sadly lacking. I really can't believe how ill informed most GPs are. There should be leaflets in every surgery or at the minimum all patients should be given suggested websites to seek further information.
The caruncle is healing after almost three weeks using both the Vagifem as prescribed and a pea sized dab of ovestin cream every night.

Hi CLKD - Your advice is so welcome. THANK YOU! The doctor suggested ibuprofen and paracetamol alternately every two hours but really this only takes the edge off when it is really bad. I have a prescription for cocodamol 30/500mg but have resisted taking it as yet due to any side effects. More trial and error required.

[Taz2]

It did used to be the case that it was the norm to take ovaries as well as the uterus but, thankfully, this seems to be changing - unless the ovaries are diseased of course. It amazes me how little information is still given to women when they are offered a hysterectomy to be honest. It is still up to the patient, it seems, to do some delving around on the internet to find out exactly what  may happen and then make the decision as to whether to go ahead or not.

I'm glad your caruncle is healing. Another member had one but I'm not sure who it was. Maybe if you put caruncle into the search box top left of the screen it will bring up any posts on this?

Taz x

[Paula]

Hi Tigerlily 1 - just a few more thoughts here, as someone who experienced VA and cystitis related pain / infections since 2014, when I needed to be hospitalised on several occasions. For myself, significant discomfort  associated with UT and VA has mostly subsided with more pain-free months than painful flare episodes, which are now fairly short lived (usually 2-3 weeks max) and treatable. I haven't experienced any symptoms for quite a few months now. At the first sign of a flare, I up the topical cream/ gel regime; drink plenty of water and take dmannose to help stall cystitis/ urethral  type symptoms.

I haven't had a hysterectomy, so will only comment on my own situation. However, would further discussion with your medical team might open up the possibility for safe additional treatment with a systematic form HRT to help alleviate symptoms, even post 60 ?

I'm also using vagifem and ovestin cream ( the latter to fix fragile scarred tissue lower down there). High doses initially, which took at least six-eight months to tolerate and find some easing of symptoms. In my ease VA was severe and it was a long road to more or less full recovery. I was told by my gynae and urologist that the two conditions were linked and topical oestrogen would represented a lifelong commitment to maintain a relatively pain free existence. Occasionally, as has been mentioned elsewhere on this thread, I up the dose of both if I feel UT twinges, vaginal pain / lack of moisture.

At the time of acute recovery, I managed to reduce nerve pain in both areas ( in particular, urethral ) by being prescribed amyltriptiline ( very low dose ) which helped for the short term and aided sleep. I also took moderate painkillers such as cocodomol when needed in the short term, and neurofen to treat short flares in the long term. My gynae recommended internally applying live yoghurt- soothing - and good moisturisers inbetween topical applications. I also find  Yes effective, but there are plenty of brands to choose from.

Sorry you didn't have much help and advice from docs during the early stages - it also happened to me. Something needs to be addressed here - isn't preventative medicine more cost effective for society and shows that we offer older women and any treatable health-related conditions the  experience the respect and time they deserve ?

[Tigerlily1]

Hello and thank you so much  for your very detailed reply. It's so good to know that you have been able to work through those very painful days and come to some sort of management strategy.
Best wishes

[Linde Carr]

I have only just joined and I am reading through the various issues. It is so reassuring to know that I am not the only one with undercarriage problems.

[Taz2]

Tigerlily - it could be that you are dealing with two different things - one is the VA and the other is that you could have scar tissue (adhesions) from your op. I have some sticking my bladder (slightly) to my bowel and this causes cramping pain - horrible. I also get bowel pain when I empty my bladder - not dreadful but uncomfortable. Has anyone mentioned adhesions to you?

Taz x

[Tigerlily1]

Hi Taz2

No one has mentioned adhesions but it is most likely that I will have a MRI scan in the near future so hopefully any such adhesions should be found.

Thank you!

[Taz2]

I don't think adhesions show up on an MRI, CT or XRay so don't feel this can't be the problem if none are found. Let us know how you get on.

Taz x