Taboo female subject

[Stroppymoo]

Been considering posting this for sometime,but if it helps someone then good. Pmr causes inflation of muscles. Ok what about vagina muscles? I am definitely inflamed down there since pmr. Quite off putting.

[PMRpro Ambassador]

Now that is an interesting statement. I think I can concur - but I never thought about it being PMR.

[bowler]

Maybe it's the side effect of the steroids, I have paper thin skin and bruise at the slightest touch, I also have Vaginal Atrophy which is the the thinning of the skin, but I have been on Pred for many years which hasn't helped,

[lesley2015]

Hiya

Rheumy said preds would cause muscle loss- including legs, diagphram and pelvic floor causing possible problem with leaking so to keep my pelvic floor muscles exercised !! Would assume PMR could also affect muscles there too - my skin alone is generally more sensitive.

Hope this may be of interest

[Brixhamhampster]

Lesley I was too embarrassed to mention pelvic floor muscles but like you I have that problem and have upped the pelvic floor exercises. I do hope it is the pmr as I never had it before and hope it will go away at some stage. Amazing talking to complete strangers about something so personal but that is the joy of this forum. Definitely something of interest!

[PMRpro Ambassador]

Bladder problems are a part of PMR - we suspected it, mentioned it to one of the research rheumies and she asked her patients - because she'd never come across it before. They said, oh YES!!! Another point to the charity! It does improve - I had problems for a long time before pred, it gradually improved to the stage I didn't feel I needed Tena (wonderful invention, we should have shares in them!). I've had a bit of trouble since this last flare, when sneezing mainly, not otherwise, but I think I'm past that again.

So it does pay to talk about such things - I've never had any inhibitions about it but then, I worked in the NHS, we talk about all sorts of things at the dinner table...

[lesley2015 in reply to PMRpro]

I have just started riding my horse again - increased pace definitely causes a potential problem- eeek - so doing exercised and urinating frequently and wearing s liner of some sort.

I think I am past embarrassment now!

[Stroppymoo in reply to PMRpro]

Yes I know have worked for nos and now a private company

[GinnyMa]

Hi Stroopymoo,

So glad your entry gives me the chance to share my story . I have had GCA since June 2015 and until I reached 9 mg I had great difficulty engaging my pelvic muscles to do my Kegels, and had an increase in urine leakage. In June I suspected a UTI and went to gynecologist who determined no UTI and sent me to Gyno-surgeon who suggested surgery or Pelvic Floor Therapy. I opted for the Pelvic Floor PT, a procedure of which I had never heard. I and difficulty getting an appointment as it has become popular I guess. Finally I found an appointment with a young woman who has made this her specialty. She taught me how to do the Kegel correctly, how to simulate coughs and sneezes to contain leakage, and gave me exercises for homework.....after six sessions, my muscle strength has increased so much that I "graduated" and now am determined to do my daily program faithfully....I recommend this Pelvic Floor Physical Therapy treatment highly!

[Greensleeves]

My pelvic floor muscles have gone weak since developing PMR . Also have dreadful burning and frequent UTI's . I knew there was a connection.

Thank you for bringing this up . x

[Stroppymoo in reply to Greensleeves]

Am very sore down there and from reading replies am gonna concentrate on pelvic floor too.

[PMRpro Ambassador in reply to Greensleeves]

Is it proven UTIs?

Get your GP to do cultures rather than just handing out abx. While we're talking about "down there" PMR often makes it very difficult to toilet yourself - and small amounts of faeces sometime leak a bit, contaminating the perineal area. That can then lead to atypical UTIs caused by gut bugs rather than the usual ones for urinary tract. They need different abx.

PMR can also make it difficult to empty your bladder fully - after you think you have finished, wait a few second and have another squeeze.

Are you also on calcium/vit D tablets? If you tend not to drink enough through the day, especially at work or when travelling, your urine can get quite concentrated and sometimes the calcium can form grit. That will then irritate the urethra, the tube that connects the bladder to the outside - and you develop cystitis.

Cystitis isn't always due to bacteria - there are other causes. One is irritable bladder syndrome or interstitial cystitis and it appears to be more common in people with PMR.

nhs.uk/Conditions/interstit...

[Greensleeves]

Me too although I keep forgetting until I sneeze !

Am using Sylk and it is so sore when I use it so I know the area is inflamed . x

[vsapey]

Yes My pelvic floor muscles have weakened and causing problems since diagnosed with PMR. Does anyone know a link or internet info to back this up. I would show my rheumatologist. He is very skeptical

[PMRpro Ambassador]

Just in case people don't see my reply to Greensleeves:

Is it proven UTIs?

Get your GP to do cultures rather than just handing out abx. While we're talking about "down there" PMR often makes it very difficult to toilet yourself - and small amounts of faeces sometime leak a bit, contaminating the perineal area. That can then lead to atypical UTIs caused by gut bugs rather than the usual ones for urinary tract. They need different abx.

PMR can also make it difficult to empty your bladder fully - after you think you have finished, wait a few second and have another squeeze.

Are you also on calcium/vit D tablets? If you tend not to drink enough through the day, especially at work or when travelling, your urine can get quite concentrated and sometimes the calcium can form grit. That will then irritate the urethra, the tube that connects the bladder to the outside - and you develop cystitis.

Cystitis isn't always due to bacteria - there are other causes. One is irritable bladder syndrome or interstitial cystitis and it appears to be more common in people with PMR.

nhs.uk/Conditions/interstit...

[Greensleeves in reply to PMRpro]

Thanks PMRpro , I'm always given abx first and cultures show bugs that won't grow or they can't get anything from them.

I have to do a fair bit of twisting about to pass water .

When in public toilets I feel quite jealous when I can hear someone doing a fast long gush , instead of my feeble little trickle .

The toileting problem makes sense when your shoulders are stiff . If you have difficulty reaching to zip a dress up you're going to have the same problems down below . Wish I had a bidet actually.

Thank you for your wonderful knowledge.

Still waiting to get GB removed. Oh the joys . x

[shella]

All good useful stuff -thank you..... whilst on 'the' subject does anyone have pain in the groin area - different to the pains back/tops of legs. Pains come and go sometimes just one side / doctors don't seem to know cause - suggested maybe nerve pain from back or just the PMR moving to new position? Wonder whether dose up steroids and see?

[PMRpro Ambassador in reply to shella]

Is it deep in the groin? Is it worse after long walks, walking uphill or doing stairs?

It could be bursitis affecting the trochanteric or iliopsoas bursae - bursitis is commonly found along with PMR and can be part of the diagnosis process. On the other hand - there are plenty of doctors who are totally oblivious of the fact and will deny it. The Leeds group agree though.

Rest and avoiding the activities that exacerbate it is the first approach but sometimes it gets to the stage where that doesn't help. Mine was sorted nicely with a local steroid injection - the original episode went after 6 months or so on oral pred but returned with a major flare at a level rest wasn't enough or really an option - even standing irritated it and was agonising! Targeting the pred to where it is needed works much better and faster.

[Mrsd12f]

Hi, Stroppymoo. I've been wondering the same thing. I've had some gynae problems for a while, but they definitely seem worse since starting steroids. I asked my rheumatologist whether this could be the case , but she said she didn't think so, as PMR shouldn't affect those muscles. However, I'm still wondering.

When the gynae problems first began, I had many blood tests which never revealed anything specific, only "inflammation". This makes me wonder whether the PMR and other problems are linked, although the PMR did not manifest itself for a couple of years. Just a thought....

This is such a ridiculous illness, isn't it?

[PMRpro Ambassador in reply to Mrsd12f]

Er - WHY shouldn't PMR affect those muscles? It can affect the bladder - same neck of the woods...

At a guess, the blood tests that suggested inflammation will have been your ESR/CRP levels. So why didn't that lead to further investigations I wonder?

Gynae problems associated with dryness would be typical of sicca syndrome or Sjogrens - which aren't unusual alongside PMR. All autoimmune disorders.

[Mrsd12f in reply to PMRpro]

I do have Sjögrens, too, so it all makes sense to me! What irritates me, if you'll pardon the pun, is that none of these specialists seem to look at the whole person: ear, nose and throat are all linked, so why not other bits?

Rant over! Thanks to all who have replied.

[Stroppymoo in reply to Mrsd12f]

Yes, I agree about the specialists.

[Stroppymoo in reply to PMRpro]

Never heard of those conditions, but that is what I'm referring to in original post; dryness that is.

[PMRpro Ambassador in reply to Stroppymoo]

You may need vaginal oestrogen in some form - creams or pessaries I think they use. Have you got a decent female GP? Or do you have a gynae?

[Stroppymoo in reply to PMRpro]

No gynae, and can see female GP if want to. Have heard of something called replens, if it still exists. KY gels not much help.

[PMRpro Ambassador in reply to Stroppymoo]

No, KY is just messy. There are some good creams on prescription though. Worth asking.

[Mrsd12f in reply to Stroppymoo]

Hello, again! Saw you had heard of Replens. I couldn't get on with it, but had more success with "Yes", which does a similar job.

All good fun, isn't it?

[rubyred777 in reply to Stroppymoo]

Hi Mrsd12f , I have been diagnosed with vagina atrophy. I was burning so much. I tried everything. Even diaper rash ointments! Even they burned! For 3 days now, no burning. I am using coconut oil! It's wonderful. Totally stopped it. I thought I was destined to live with it. Try it.....You will like it....Ruby🌹

[Mrsd12f in reply to rubyred777]

Thanks ruby red, might give it a try, though unfortunately, I have allergies, so a bit wary.

[bowler in reply to Mrsd12f]

Hi Mrsd12f

further to my other post re vaginal atrophy. I was so sore and inflamed that I bled, also having lots of UTIs [ not good as I also have stage 3 kidney disease ]

I was fast tracked to hospital and had bladder investigation [ all clear ]

I was then seen by a Gyne, who was very thorough, she found a fibroid, and my endometrium was thickened to 25mm, also had a biopsy, no anaesthetic [ ouch ] that came back clear. She also found I had significant atrophy to the cervix,vagina, and vulva, and said she was certain it was the atrophy that was causing my UTIs and soreness problems, I was prescribed vasifem pessaries, and within a week the soreness had gone, However as they contain oestrogen I only used them for about a year and stopped them as I was worried about too much oestrogen at my age. [ now 71 ]

Fast forward 2 years and the symptoms are back, so looks like I will have to go back on the vasifem.

Apologies to the men reading these posts.

[PMRpro Ambassador in reply to bowler]

Do 'em good to know the joys we have to put up with!!!!!

[Greensleeves in reply to bowler]

Hi Bowler I've also got the atrophy and I'm going to start another course of Vagifem soon . I've just started Nitrofurantoin yet again and hope it clears uti symptoms up before I have my gallbladder surgery in a weeks time .

I won't start the vagifem until after surgery.

I believe NICE have changed their advice somewhat on HRT .

I also had an endometrial biopsy 5 years ago . Crikey it was painful. It was completely unexpected, it was my first gynae consultation . I told my GP it was an awful experience and he thought I was making a mountain out of a molehill!!

I'd like him to feel as though your insides are being yanked out !

Hope you feel more comfortable soon. x

[bowler in reply to Greensleeves]

Hi Greensleeves

I am also back on the Vasifem, I stopped it for a while as I was afraid of having too much estrogen at my age [ I'm 71 and my mum died of cancer of the womb.] I was OK for quite a while without it but the atrophy is back, and I was getting more UTIs. I have never been prescribed Nitrofurantoin,, I always have Trimethoprim just 6 tablets, which usually clears my UTI.

I had an endometrial biopsy 2 years ago, and like you it was very painful with no anaesthetic, however apart from the sever atrophy they found I had a 16 mm fibroid, and the endometrium was thickened at 25 mm. they found the uterus to be axial in position, I think that means tilted ?

How strange you have gallstones, so do I, I have one large one and a smaller one that has just been found, they don't seem to be troubling me too much at the moment !! but I do get the occasional "flare up" if I over dose too much on the fat/cheese, I also have a hiatus hernia which doesn't help.

As for you Dr, he would say that wouldn't he, [" your making a mountain out of a molehill" ] re your biopsy, he doesn't have to have it done doe's he,? pity.

Good luck with your surgery,

[Greensleeves in reply to bowler]

Hi Bowler , what a coincidence I also have a tilted uterus and fibroids.

It must be the ligaments that hold everything in place that have weakened as it wasn't tilted when I was younger.

I'm sorry you lost your mum to womb cancer. I understand you being more cautious but the burning and dryness is debilitating.

I can't use the vagifem until after surgery ask it increases the right of DVT .

It's a damned nuisance though as I'm fed up with taking antibiotics. Trimethoprim doesn't work anymore and now the Nitrofurantoin makes me terribly bloated and uncomfortable.

I think the tilted womb and being on Pred doesn't help with the atrophy or the uti's .

I would rather leave my gallbladder where it is but it's caused some attacks that have lasted over a weekend and I'd prefer labour over that pain .

Can't wait until I'm active and can start the Vagifem. I have bleeding with the atrophy too . The Pred must surely make it worse by thinning the skin and yet it doesn't ease the inflammation.

Take care I hope you feel relief soon. x

[PMRpro Ambassador in reply to Greensleeves]

I had a transvaginal u/s the other day to monitor an ovarian cyst - OUCH! The male gynae was lovely - apologised nicely. We were talking about it after, the first painful examination I had was post baby no 1 and the registrar was really nasty too. I went to the GP a couple of weeks later - there was a good reason for me nearly hitting the ceiling, I had an infection! And the nice gentleman here agreed: the patient on the receiving end is the only person who can tell how much it hurts!!!!!

Mind you - I've found female gynaes even less sympathetic!

[Greensleeves in reply to PMRpro]

Ouch and double ouch PMRpro , my goodness . I think I'd insist on a local anaesthetic if I had to have that .

I'm not surprised you found your first experience so painful after having your baby and then getting an infection.

I have to agree re: female gynaecologist's . Some might as well ask us to 'man up '.

We all have different pain thresholds and what might be painful for one person might be a different experience for someone else.

Take care x