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[parker]

Hi all, I've joined this forum because I'm looking for advice from those who might be (have been) experiencing the same things.  Over the past year or so I saw an endocrinologist, a gynecologist, switched GPs, did 3 ultrasounds and countless blood tests on both NHS and privately, and I'm still unsure where I am. I have unexplained pelvic pain and - unrelated to this - I'm not sure whether I'm perimenopausal or menopausal.

I'm turning 40 this year and last year I was told I was perimenopausal - this after a long stream of investigations. I started missing periods at the beginning of last year, had periods every 2nd month. My GP told me last August that I also displayed PCOS signs. Then in September I went to see an endocrinologist who specializes in PCOS, he said it wasn't PCOS, but low ovarian reserve and that I was perimenopausal, and he recommended to try Femostone 2/10 (which I did not go for at that time).

Then periods stopped in October. In November/December, I started to have hot flashes and also daily sweating. Then in January, very strange pelvic pain appear on the lower left hand side, stabbing pain,, really bad when sitting.

Went to see a GP first (I changed GPs because I got fed up with the old one), then a private gynecologist, had swabs, cervical screening, bloodwork (including cancer marker CA125), two ultrasounds, even the AMH fertility test etc.

They didn't find the cause of the pelvic pain, but confirmed once again low estrogen levels and also high FSH (19). Both the new GP and the gynecologist suggested HRT for dealing with hot flashes but also for osteoporosis prevention. They prescribed Femoston, which I started in February but could not stand, my feet got swollen and I felt horrible on Femostone - so I abandoned after 2 months (2 packs). Got 2 withdrawal bleeds on the progesterone part of Femostone which I was told it was normal.

The gynecologist then told me I could opt for Mirena coil (I wanted a contraceptive too) plus estrogen (Evorel 50 patches) for osteoporosis prevention and for dealing with hot flashes. I had the coil inserted by my GP late April, and started the Evorel patches too, and it seems like it's working much better for me, I feel much better and there are no hot flashes. There was some spotting and minor pain in the first 2-3 days but then it was all good.

However, this Sunday I started bleeding and it looks like a period (which I have not had since October). I am very confused now, I thought there was no bleeding on the Mirena. Is it possible that my periods came back? or is it some sort of withdrawal bleeding similar to the Femoston one? I'm due to see my GP in two weeks for now, so that she can check on the coil and how I'm doing on evorel, and has also mentioned a referral for a bone density scan), but until then is this something I need to worry about?

For the pain part, the gynecologist suggested I wait a couple of months and if the pain doesn't go away, he can do key hole surgery to investigate it - which I really don't want to do. The problem is, several months later I still have bad pelvic pain on the low left hand side which nobody can explain. There is no infection, no cysts, ultrasounds were all clear, cancer marker test came out negative, PID or IBS were ruled out, it's not PCOS either, cervical screening was fine, etc. The pain is aching, not continuous, it comes and goes and it's much worse when sitting. I did my own research online and I suspect it might be something called pudendal neuralgia (PN) or pudendal nerve entrapment (PNE) - which the gynecologist has not explored yet.

Anybody has any suggestion on what the pain could be, perhaps similar symptoms... and also answers on the bleeding part, is it normal on mirena+evorel 50? I'm so fed up with doctors and reading stuff online, and also very stressed, it has started to affect my work life - and I can't afford anything bad to happen on that front (I'm a single mum working full time).

Thank you! and sorry for the very long post.


PS. To top it all up I gained weight over the past 3-4 months, and it's not due to the HRT, it's comfort eating!

[BrightLight]

Hi Parker,  sorry to read about all that you are going through.  I am not knowledgeable about HRT but there are many ladies here who are, hopefully someone will come along.

You don't mention a diagnosis of Premature Ovarian Failure which is a term for early menopause before 40 but in any case the Daisy Network is an organisation specifically for women experiencing this, I just thought it might be useful as a resource, although it sounds like you have read so much already. The one thing I do know about ovarian failure as opposed to 'natural' menopause is that it is possible for the ovaries to 'wake up', maybe this is a possibility but there are so many with regard to the bleeding.  Someone will come along and comment whether this is the HRT.

The pelvic pain.  It sounds like have had some thorough investigation and with your mention of neuralgia/nerve entrapment I wondered if you had tried any physical therapy treatments to see if you get relief. I have myofascial pain syndrome which is a muscular skeletel issue and am aware that terrible pain can come from a structural problem.  Maybe it is worth finding a physical therapist to consult before you go down any more routes about an internal cause.

[parker]

Thanks, the endocrinologist specified 'early menopause transition' (and the gynaecologist confirmed it), is that the same as POF?

Oh, and I forgot to mention I was diagnosed with hypothyroidism when I was 22 yrs old (on thyroid hormone pills since then, but quite stable).

Re the pain, the pudendal neuralgia or PNE idea is mine - based on endless reading online. Nobody has investigated that yet. My plan is to try and get up from my desk more often, do daily walks at lunch and start yoga, see if the pain goes away, and if not then try a physical therapist or go back to the gynaecologist. The pain is not that bad during weekends but in the office it gets really bad, to the point where I can't focus anymore. I have a long weekend coming up so monitor closely. I went skiing in February and the pain during that week was minimal.

[Salad]

Hi Parker 

Have you had any previous surgery? I get pelvic pain but it looks like mine is related mainly to adhesions.
It's very wearing having pain so I totally sympathise with you and hope you get an answer soon.

[Maryjane]

Hi Parker.....as soon as I read your post I thought that sounds like PN.......i and a small handful,of ladies on here has this awful condition..........I have extensively researched......and seen the very best the UK has to offer on this problem ( unfortunately this had to be done privately in London) it has found me no cure perse but it stops any unnecessary investigations that lay down scar tissue to make the problem worse......you only have to see this with the way the American medical system go about this condition and they are in a mess from all the invasive investigations.

The best thing you can do is have to see a women's health physio......I am afraid the NHS are no good at this as they are still telling ladies to do,pelvic floor exercises which is the absolute worst thing you can do ( they are bad for the vast majority of ALL ladies anyway) I was at a pelvic pain seminar the other week in London with the few experts talking about this and there was a physio giving a talk, and there where some NHS Physios there and they where shocked at how they are still be taught to get us to do pelvic floor exercises when in pain, having listened to the physio they now realsie that it is so wrong.......anyway I digress......

I can direct you if wanted to some excellent physios.......but I am afraid nothing is going to get better until you stop sitting as that PN is getting more and more aggravated, it is also possible your sciatic nerve is also irritated and if you look at where it runs it is very best friends with the PN.........there is also a chance local oestrgen may help.....as this is more common with peri/meno as muscles become weaker......there is also something called restorative exercise by Katy Bowen that is getting good reviews extreme commitment there's a guy in Bristiol who teaches this he has had PN for 14 years is now better.

I advice strongly against nerve blocks......the epicentre for excellence on PN is in Nantes in France Professor Robert and he has been telling others to stop the steroid part of the nerve block for along time as it irritates the nerve more and damages by laying down more scar tissue........and surgery is the VERY last resort and should only be done by the French the NHS has paid for some to have this done ( a battle but within our rights) under no circumstances let the one team in the UK that do this surgery privately there track record is BAD.

The drugs some take are Amitrptyline/noratriptyline/gabapentin/pregablin which for 30-50% work on the nerve pathways to the brain for the rest they don't work.......and if we where else where in the world we would be eating " brownies" as the evidence is that is the best form of nerve pain control in the eaten form.

So stabbing/burning/hot/cold/tingling/rawness is nerve pain....which may be caused by PFD pelvic floor dysfunction where the vagina has gone into cramp and tightened around these nerves.....hence not doing pelvic floor exercise as it just tightens an over tight muscle even more.....it's very scary how little time is spent on the nerves when Gynaes are training and it is brushed over the PN is the only functional and sensory nerve, it controls our bladders/bowels and orgasms yet so much is taught about it......

[Maryjane]

Yet so much is NOT taught about it

[parker]

salad: thanks, I didn't have any surgery.

Maryjane: thank you so much for the very informative post. Yes I didn't like the sound of the steroid nerve blocks at all. I'm now trying to manage that pain on my own, unfortunately I can't reduce sitting much, I have a 9-5 office job. I'll try to be more active physically, go swimming, walk in the park, stuff like that. I'll give myself this summer and if it's not improving I will start looking for physio alternatives. My private medical insurance (WPA through work) covers some of that I believe, need to check cover levels. If you can recommend some names I'd be grateful. I live in SW London.

Re my bleeding, it seems to have gone down today, so it lasted around 4 days, which confirms my suspicion that my period came back and it's not because of the HRT. Do I need to repeat bloodwork now? Is there a chance that I don't need to take estrogen anymore?

[Maryjane]

I would invest in one of the cushions then.......and get up from your desk as much as possible......and have very good posture when sitting.......depending on your boss when you have such a problem by law they should supply you with a sit stand work station at the push of a button you can either sit or stand......it's what everyone should have really as sitting is the new 21st century ticking time bomb for many health conditions and complaints.......I work for myself and Stand and rest as needed so I am lucky and its why I have got much better.

Can't answer re HRT but would definately use vagifem to see if that's part of the picture......off to work now in my cold shed.....wedding florist and two weddings this weekend.

[Tangerinedreams]

Sorry, but what does PN stand for?

[parker]

Pudendal Neuralgia PN

[parker]

So I'm back from a short break in East Sussex. For 4 days I had virtually no pain, back to the office today and by lunchtime pain returned... it is that effin' pudendal nerve!!! Might as well quit my job now, and find something else to do.

Also I now doubt my bleeding is from a period, it's probably due to Mirena, as it's been longer than one week. It's strange, as there was almost no bleeding for one full month after insertion and now it won't stop.

Aargh!!

[parker]

Hi everyone, I'm back with more questions, decided to use this thread for background. So I'm on Mirena coil for contraception plus Evorel 50 for osteoporosis prevention and hot flashes. I still get a bit of spotting but looks like it's getting better and better each day.

Except today I had a bit of a gross episode, a small piece of skin/tissue came out of my vagina together with the blood. Freaked out but friend Google says it might be normal, just uterine lining shedding, what is called a 'decidual cast'. Endometriosis was already ruled out several months ago.

Has anyone else experienced this after Mirena insertion? or on HRT? I read that it is possible that because I have not had a period in a long time, and as an effect of estrogen stimulation combined with the effect of progestogen in Mirena, this can happen...

GP checked Mirena post insertion, said it all looked good. Other than that I'm feeling fine, no hot flashes anymore and mood-wise I'm ok, much better than I felt on Femostone.

Thanks.



PS. The nerve pain seems to be almost gone too, I became a bit more active physically lately and I rarely get it.