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Any gynaecologists or female hormone experts out there? Please?

(22 Posts)
heythereconniver Tue 24-Jan-17 10:25:48

Posting here in desperation.

I urgently need to find a hormone therapy treatment that will 'starve' endometriosis without carrying the side-effect of relaxing the muscles.

I have long-term instability of the pelvic girdle and desperately need the muscles around the pelvis to be strong to support it. Things have been super until recently when a flare up of endometriosis has led to a painful but relatively small endometrial cyst on one ovary. The standard treatment for this is progesterone to shrink this cyst but unfortunately that is causing my pelvic girdle to fall apart, as it did during pregnancy.

It's difficult to problem solve effectively when in pain and this not a problem that gynaecologists would routinely see. I do need the hormone therapy to work because surgery could cause a lot of problems.

If anyone knows about hormones or has anything to suggest I would really be deeply grateful.

WorraLiberty Tue 24-Jan-17 10:33:58

Honestly, the internet is full of fantasists/exaggerators/trolls.

I think you'd be off your head to take the word of anyone on a health subject so serious.

What has your doctor said/advised?

dailymaillazyjournos Tue 24-Jan-17 10:46:28

i agree with Worra. This sounds a very specialised area and that you need very specific advice rather than the "I took Elleste Duet and it really helped my hot flushes and night sweats" sort.

Have you seen/are you seeing a specialist about the endometriosis? If so perhaps your GP can ask them for advice re HRT.

Sidge Tue 24-Jan-17 10:48:50

You really need to see your GP.

A gynaecologist may suggest a trial of something like Zoladex, but what effect this would have on the pelvic girdle I have no idea. It can certainly be an effective treatment for endometriosis.

jacks11 Tue 24-Jan-17 10:55:01

Agree with the above- as a HCP. I don't know if you are under the care of gynaecologist at the moment or working through this with your GP (I imagine the former), but you need to talk it over with whoever you are being treated by at the moment and ask them these questions. If they don't have the answer, they may need to seek more specialist opinion - i.e. if GP, refer to gynaecology or if it is a gynaecologist they maybe need to seek advice from a sub-specialist or tertiary centre. If you feel that whoever you are seeing just now isn't getting things right, you are entitled to a second opinion.

You are more likely to get appropriate advice from talking it over with the Dr who is treating you now as they will be able to take into account your medical history and so on. I wouldn't rely on anecdote from MN or google searches.

ClusterFuckTadpole Tue 24-Jan-17 11:04:07

You are unlikely to get a response from a doctor. The GMC takes a dim view of providing medical advice over the internet. You need to see a doctor in person.

heythereconniver Tue 24-Jan-17 11:23:50

Thank you for these responses.

I have actually found online communities to be fantastic sources of medical information without which I would still be in a wheelchair. Perhaps this is especially the case because most GPs and many gynaecologists are woefully under-informed about severe long-term PGP. Of course I do nothing without taking it to a doctor but it's surprising how grateful for suggestions they can be when the condition is rare.

My GP is happy to admit she knows virtually nothing about long-term PGP or how treatment for endometriosis would be affected by it. My gynaecologist is similarly under-informed and I appreciate that she hasn't encountered this problem before.

Doctors comment on medical issues all the time on mumsnet. I would still be very grateful to receive hints or pointers from anyone with expertise in this area.

NotCitrus Tue 24-Jan-17 11:41:05

Much sympathy (have long term PGP/unstable joints and ropey gynae stuff).

I would ask to see an endocrinologist as the best bet, as your problems need to be balanced against each other. It could be keyhole surgery is the best bet.
Also a rheumatologist - have you been diagnosed with a hypermobility syndrome or EDS, as many people with PGP turn out to have these (even if you don't htink you are hypermobile), and the rheumatologist may know more about how hormones affect your joints (but basically yeah, progesterone alone is not fun for joints...)

After those, a pain management specialist may be useful if you still have problems.

heythereconniver Tue 24-Jan-17 11:52:43

That's a great suggestion notcitrus, thank you.

WorraLiberty Tue 24-Jan-17 12:02:58

Doctors comment on medical issues all the time on mumsnet.

Anonymous nicknames comment on medical issues all the time on Mumsnet, not necessarily doctors I'm afraid.

Best of luck. I'm just advising caution thanks

PossumInAPearTree Tue 24-Jan-17 12:11:29

Remember you can ask to be referred anywhere. I'm in the Midlands and have a rare condition. Local Dr's were crap. I googled for the UK expert who is in London and asked my gp to refer me. Kings has a respected gynaecology endocrine clinic

FuckOffDailyMailQuitQuotingMN Tue 24-Jan-17 12:18:16

I saw a national expert on hormones that helped balance mine - I wasn't sick like you (pelvic girdle) but had horrible back pain due to hormonal muscle softness. GP couldn't help. I paid privately to get the hormones correct then the prescription transferred to the NHS. Now I have no back pain and feel much better all around.

Initial consultation about £300 and tests and follow ups you are talking about £1,000. If that's at all feasible or something you might want to look into (he also works NHS so you could ask for NHS referral but it may be out of your PCT area)

PM me if you want more info. Hope you find some help.

heythereconniver Tue 24-Jan-17 12:48:24

Thanks worra. I've been devoutly thankful for advice received in the past but of course you are right.

Thank you possum.

Fuckoff that might be what I'm looking for. Yes, we're willing to pay. I'll message you.

PossumInAPearTree Tue 24-Jan-17 16:26:57

Even if it's a different pct you can ask to be referred on NHS. Worth a try rather than paying.

heythereconniver Wed 25-Jan-17 10:20:55

Thanks possum. My Gp refused to write any kind of referral letter at all when I saw her last week, even for a scan that I was willing to have privately. Perhaps they're being told to keep referals down? She was mainly concerned with warning me that any pain experienced in relation to this issue would not be medicated because it wouldn't work(?) and I would have to 'live with it like lots of people do'.

Got a referral for the scan that showed cyst via internet gp (push doctor) so I suspect I'll be funding initial consultations privately.

Hopefully we would be able to make a case for further care on the NHS after that if recommended by a consultant.

This is not the first time I've been in this position. Pelvic girdle pain is written off by most doctors as a mild pregnancy related condition they don't need to factor into the picture at all.

PollyPerky Wed 25-Jan-17 11:15:12

I'm amazed that your GP refused to refer you. They have no right to if you are going to see someone as a private patient. You need to ask why! It's not up to GPs to monitor the workload or referrals of consultants who also work outside the NHS!
You need to speak to the PA of whoever you want to see (consultant.) Ask them if you actually need a referral letter (not all consultants ask for this)- mine own ( top UK gynae, Harley St) doesn't and I self-referred 9 years ago.

mrsdane Wed 25-Jan-17 11:19:40

So is it the hormonal imbalance that needs to be corrected before the PGP will be resolved? I'm a sufferer from pregnancy and am still having issues. I'm seeing a physio but it's not improving, but am still breastfeeding. I see different schools of thought believe breastfeeding may prolong the pain due to the relaxin levels.

Would love to hear of any treatment advice any fellow sufferers have found works if possible. Not meaning to hijack!

heythereconniver Wed 25-Jan-17 12:38:00

polly She didn't think a referral was necessary because it is 'normal' for women in their thirties to have worsening menstrual cycles, apparently. From previous experiences with her, I think she is just slapdash.

mrs You're right, there are different schools of thought regarding breast feeding. Pelvic Partnership (very trustworthy) would say to go ahead and breastfeed. You can still be tackling the problem and having manual realignment when everything is still stretchy is a good idea anyway. You need to be sure your physio is doing the right job though - she should be carrying out manual therapy to actually realign the pelvis, then prescribing exercises that will develop the muscles to support this. (Google Pelvic Partnership - questions to ask your physiotherapist). My problem is a bit different - I had the pelvis more or less realigned and everything had settled down, but the re-introduction of progesterone caused the balance to go again. Good luck flowers

mrsdane Thu 26-Jan-17 22:03:48

Thanks hey, hope you get the help you need flowers

LastnightaDJ Sat 04-Feb-17 20:56:26

@PollyPerky and DailyMail, if you see this, would you mind sending me a PM with details of your specialists? I suffer badly from mood swings throughout my cycle (actually, post menstrual tension... Yes, it does exist!) but my GP has no answers beyond suggesting that I take an antidepressant (! Honestly... for something which arises a few days a month and which I KNOW is caused by my sensitivity to changes in hormones? Sledgehammer to crack a nut, anyone?) I am willing to pay privately to see a specialist who understands hormones and who would be more open to discussion about other approaches. Or at least, who could talk me through why it happens - for me, understanding it better would already help. I appreciate my issues are minor compared to some of those discussed upthread - my sympathy for those suffering. It is a pity that hormone issues appear to be so poorly understood by some in the medical profession...

heythereconniver Sat 11-Feb-17 21:16:15

Dr Oak (Harley street) definitely worth a google last

LastnightaDJ Sun 12-Feb-17 06:51:12

Thx heythere!

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