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[racjen]

Hello all, I've really had enough - having had a 15 min consultation with an NHS gynae who recommended the Mirena with no knowledge of my history (hormonal anxiety and depression) I just feel I've got to do something myself or see my life completely disintegrate. So who do I go to?

I seem to be a particularly difficult case because my menopause was caused by chemotherapy at age 50, my depression responds to estrogen, but progesterone triggered acute anxiety which remains, despite breaks from utrogestan, changing to mirena etc. In addition I can't tolerate ADs or other drugs, they make me suicidally depressed, and so far testosterone has made me similarly depressed. So ll the usual fixes haven't worked for me and I'm getting more and more depressed. I've already seen Dr. Sarah Gray early on in this - she put me onto high estrogen, which did help, but since the anxiety took over she doesn't seem to know what to do either. Louise Newson isn't taking new patients right now. Nick Panay and John Studd both seem to have quite variable reputations. Can anyone suggest anyone else who could give me some hope? I can't afford to waste money on this, and  I also can't face a wasted trip and yet more false hope.

[Bo]

Have you considered therapy/counselling? I had cancer 18 years ago and had a 'reactive depression' to it once i was through the chemo. I think this is quite a common experience to such illness: many people around me were saying i 'should be full of the joys' yahda yahda yahda because i was through it all, but i wasn't. Just one friend suggested what might be going on. That took me into therapy but i only had a few sessions then which didn't do very much, although i admit that i did stop therapy early. More recently, i have had regular sessions for a while which have helped enormously. 

[racjen]

Yes thanks, I've had years of psychotherapy, had started training as a psychotherapist before this all started and have since had MacMillan counselling and EMDR. This is not a psychological problem, but it's driving me insane trying to convince professionals otherwise and get the help I need.

[ladylollipop]

Hello racjen, so sorry to read that you feel so bad and nothing really works. I have just read on a German website that some women take dhea for menopause problems and they are very satisfied. I haven't tried it myself so far but I asked an old friend who is a gynecologist and he said if I am feeling really bad I could take it. He has a lot of patients who take it. It is just an idea.

Hug
Lady Lollipop

[racjen]

ThaksLadyLollipop, I have looked at dhea as a possibility, but so far can't see a lot of evidence that it works, and also given my history of drug reactions I'm scared to try anything new, especially on my own. Just want a genuine professional who really knows what they;re doing to support me through this (but maybe there just isn;t such a person out there....) x

[Perinowpost]

Racjen

If the problem isn't psychological and is due to a sensitivity to hormones wouldn't it be better to concentrate on stabilising them.  I speak as a fellow progesterone intolerant.  I have a hard time with prog withdrawal every time, it never gets easier and affects my mood for about a week each cycle (just going through it now).  And like you I'm on Utrogestan which is the only prog I've been able to tolerate (in small doses). I'm absolutely fine with the oestrogen part. Just a suggestion but one thing which does help my mood is concentrated fish oil (high grade stuff, not the type you buy in Holland and Barrett).  Just a thought as it definitely helps me.  I do feel for you as it's not easy, and in fact I'v been referred to see a gynaecologist in Bingley later this month to explore this very problem. Will keep you posted x

[racjen]

Well yes, that's what I'm aiming for but at the moment I'm in the dark about how else to do it. The Mirena was supposed to stabilise things by levelling out my progesterone intake, but that didn't work. I've tried all sorts of supplements including things like fish oil, but nothing touches the acute morning anxiety that's plaguing me, and I need advice from a genuine specialist who understands how hormones affect the brain.

[Perinowpost]

The Mirena didn't work for me either, it left me with a permanently flat mood and I stuck it out for 6 months; it's not the miracle it's claimed to be if you're very prog intolerant. It's all been said before of course but there should be some alternative for the small percentage of women like us.

Don't give up and feedback on any breakthroughs and I'll make sure I do the same x

[racjen]

Well I guess the alternative for women like us is to get rid of the progesterone problem by having a hysterectomy. And if I could be sure that would give me my life back I wouldn't hesitate. But given that I suffer from this awful anxiety regardless of whether I'm taking progesterone or not I'm not convinced that's the answer. And the last thing I want is to set off a whole load of new problems by having a hysterectomy, but not solve the initial problem.

[NorthArm]

Hi Racjen

Sorry to hear you're still suffering 🙁. How much oestrogen are you taking, if you don't mind me asking?

I've decided to go for the hysterectomy if offered - anything to me is better than murdering myself with prog every month. I just can't face the thought of a conti regime atm although I would like my periods to stop now xx

[Lanzalover]

Hi racjen

Louise Newson has a list of other menopause clinics around the UK.
It may be worth having a look to see if there is one near you.
You would however need to check the Dr out if you manage to find one near you or perhaps you could ring the clinic and see if they have experience of menopause caused by chemo.
Good luck
Lanzalover x

[sheila99]

Magesium deficiency can be associated with anxiety and depression. it might be worth trying a magnesium supplement though of course it will make no difference unless you're deficient.
  Do you know how long you have to be off prog before you know if that's the cause? Just wondered if this was a possbility, perhaps with a scan to measure thickness instead.
 Sorry, can't offer any other help except to send cyber hugs and hope you find the answer.

[racjen]

Thanks Sheila, I'm already taking a magnesium supplement - supposed to help with sleep too but has no effect on that either. I'm currently on Evorel 100 patches twice a week, when my estrogen was last checked back in June it was around 1000 (took months to get it to that level as it was practically zero after chemo) but because i have no specialist after-care I have no idea what it is now, for all I know it may have plummeted again as at one point I was on 2 x 100 patches to get it this high.

I did look at the list on Louise Newson's page, and also all the different doctors in Nick Panay's team, but to be honest i just feel totally flummoxed. My problem is clearly pretty unusual, I'm now quite severely depressed and I just don't have the energy or motivation to phone round all these different people trying to work out if anyone can genuinely help me. Plus of course when you go private they're all after your money so they'll say they can even if they have no idea....

[Ladybt28]

So sorry to hear that it didn't go well with gynae

See if you can find the posts from Dr Studds' patients on here and then maybe pm them directly to get their views.  There are a fair few about.  I was messaging a lady here who had been to see Prof Studd.  They will vary about how they found him but I believe from what I have read here Professor Studd is the main man for hormonal depression and progesterone intolerance.  I was as flummoxed as you and couldn't find anyone to help me so I know the desperate feeling and I was going to travel to London from NI to see either Nick Panay or Prof Studd.  However, the ladies here helped me and I phoned the meno clinic here in Belfast and put my foot down - I got seen and I have had 2 telephone consults since, although I am still not right.  There is a big meno clinic in Queen Charlotte's hospital in London I think, maybe you could get an NHS referral if you are prepared to travel.

I suffer hugely with hormonal depression but on a scale of 1 to 10 when I started to sort it I was minus 10 now I would say I am +2 so still lots of symptoms, flat depressed, tearful on occasion, anxious when caught by things I am not expecting but nowhere near the suicidal/manic mess I was.  I know in my gut I am going to have to put my utrogestan on the shortest time I can take it for but under supervision and that is likely to sort the the progesterone problem. I can't guarantee but Im pretty sure that is the direction to go in from what I have read here and what I have learnt about myself since my hrt journey went really up the left 2 years ago.  The gel is just about ok but I am still flat and not feeling "ok"  I dont want good I just want "I feel ok today".
Racjen - things really need to settle - your oestrogen levels sound ok which as the ladies told me here when I had similar problems makes progesterone the culprit.  I am no expert but the ladies told me to stop my progesterone altogether which I did for 2 whole weeks (well a bit more actually) and started to feel better but although I am happy to play around I wouldn't recommend you do it without supervision But where to find your supervision, that is your problem.  What area of the country are you in?

Perinowpost - how long do you take your progesterone for?

[BlueButterfly]

Sorry haven't read all the other posts...so I apologize if this is a repeat .....but how are you blood sugar levels? I only ask because low levels can cause anxiety. The last few days I've been dealing with what feels like crazy blood sugar changes...one being waking up in the morning absolutely exhausted, shaky and anxious. I felt that most of today with heart racing, pounding and total exhaustion. It was a very bad day. I sat on the couch for about 90% of it. I missed lunch because I felt so awful... finally tonight feeling pretty okay....loaded up with a lot of protein with my carbs at dinner and feel the most stable I have all day. (Not great but a big improvement) It might be out there but an idea.

I did read an article today about it..besides the effects the meno has on blood sugar, our bodies can also over-react to the low levels because our nervous system is already so overloaded with the meno stuff. So it sends too strong of signals when our levels drop so instead of just being hungry we can get a whole bucket of symptoms similar to meno symptoms...so a big mess of things trying to figure out what we actually need.

Again, just an idea. CLKD told me about grazing more and when I'm not feeling like I want to crawl into bed and stay there forever, I try it and it does help.