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 Post subject: Introduction and question about treatment
PostPosted: Thu Sep 05, 2013 6:08 pm 

Joined: Thu Aug 29, 2013 9:34 am
Posts: 2
Hello there,

I thought I would introduce myself. I am Janne and I have been reading these forums as well as researching PMS for some time. I get severe PMS and I have made several trips to my doctor about it. I am a PhD student, so the effect that this condition has on my ability to work often goes unnoticed. However, before that, when I had a job, I had about 15-20 sick days in a year, which was very precarious for my employment.

I have gone through every everyday treatment that there is, and have visited my GP several times. However, they do not take me seriously. Despite there being a whole range of symptoms each month, by far the worst problem for me is the extreme fatigue, which explains my sick days in the past. It is unlike ordinary tiredness. Rather, it is complete exhaustion - heavy limbs, needing to sleep for longer than the night allows me. I have kept a diary and am certain of its linkage to the luteal phase and just from looking at the literature I wonder if it is caused by progesterone (I also struggled on a high progesterone pill prescribed for PMS). All I am certain of is that I am extremely sensitive to hormonal changes.

I would like to get this sorted out while I still have several years of menstruation ahead of me. As I say, the main problem for me is the tiredness, which is totally debilitating. I am worried about the consequences for staying in employment once I have finished my PhD. When I do make it in, I often fall asleep. I wish my doctors would take it seriously. I would have thought they would understand because I have friends who are student doctors, and if they had this problem it would affect their ability to practise professionally, so I thought they would identify with the problem of needing too much time off, but I think they are too busy to be concerned about the consequences for people's lives.

I have never used GnRH or any more radical treatment. I would like to ask for a referral to see what can be done because I am fed up of this happening every month. However, I am afraid the consultant won't understand. I am in Glasgow. Does anyone have experience of what my next steps will be. If it is quicker, simpler and less restrictive I would consider BUPA but I have no experience of private medicine so I do not know how it works.

Thank you for reading.
Janne


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 Post subject: Re: Introduction and question about treatment
PostPosted: Thu Sep 05, 2013 6:25 pm 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
Hi Janne, Welcome to NAPS. You're in the right place for sure. I am also in Glasgow and used GnRH analogues for years very successfully given to me by a fab consultant locally. Unfortunately, due to the charity laws I cannot give you info here but if you check your messages folder, you will get some info. x

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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 Post subject: Re: Introduction and question about treatment
PostPosted: Thu Sep 05, 2013 7:35 pm 

Joined: Thu Aug 29, 2013 9:34 am
Posts: 2
Thank you, pmddsurvivor. I have replied to you. Thanks for your welcome. Great to have your experience on here.


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 Post subject: Re: Introduction and question about treatment
PostPosted: Fri Sep 06, 2013 8:13 am 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
Hi there,

Just wanted to say welcome to the boards and you are totally doing the right thing being on here and making plans to get a referral. It can sometimes be a little difficult with an NHS GP but go determined and demand that you get a referral. Sometimes it helps to plan what time of the month you go in!

I decided to properly tackle my pms about 3 years ago, even though i've probably in some way or the other tried getting help in the last eleven years. But I'm on a treatment now and fingers crossed my pms symptoms have significantly improved.

Best Wishes,

X


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 Post subject: Re: Introduction and question about treatment
PostPosted: Sat Oct 11, 2014 4:18 pm 

Joined: Sun Oct 05, 2014 1:29 am
Posts: 6
Hello Janne and all

Sorry this is a late reply, I’ve only just stumbled across this forum. I hope you found a doctor that could help?

I’m 31 years old and I’ve been suffering for approx. 12 years with severe pms, but getting more regular in the past 5 years and have only recently seeked professional treatment. My mother and my grandmother had severe symptoms though they find it hard to talk about and they were too proud to ask anyone for help. There is a real put up with it and carry on type of attitude in my family no matter how crazy or absurd it gets.
I’m also trying to keep a career alive and am making preparations to start a PhD next year.

I feel we are dealing with a taboo issue, women’s problems, and mania. I have tried to speak with a couple of my close friends about it but it’s always been uncomfortable.
I’m really grateful for this forum and I would love the chance to meet some people, does anyone know if there are ever any nights or meetings?

A month ago I bit the bullet and started a course of oestrogen through a private gynecologist in London, I have to say it was incredibly tiring initially as my body was getting used to new hormones, but the past 2 weeks have been my best in years, I hope it continues.
I was offered Testosterone but I decided not to take it at all as I felt it was prescribed out of habit rather than need, my energy levels and libido are fine when not affected by my cycle. I do wonder if some of these doctors have sponsors and actually I would say now that my libido is probably too high!

I was worried about losing the good half of the month, I really like life when I’m not in the midst of pms tension. But it has given me time, not having a low and I feel natural if that’s makes sense?

Sometimes, this might sound crazy but I’m grateful that I have experienced the pain that I have, because it makes you realize how beautiful life can be, it’s the cycle that gets me, I can go to those dark places, explore even and battle through but not repeatedly like clockwork. I was suicidal at times.
I really couldn’t carry on with out trying a more radical treatment, half the month would be agony and half the month I would worry about the agony for my husband and me.

I am worried about taking the progesterone on the 1st November. I know I need to have a bleed, I have been thinking to go back and ask for a pessary, which I have heard is less intense...

All warm wishes

Bee


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 Post subject: Re: Introduction and question about treatment
PostPosted: Mon Oct 13, 2014 3:08 pm 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
Hi Bee,

welcome!

I seem to be taking the same treatment as you - i refused the testosterone after a while as I didn't think I needed help in that area and actually hair growth in unusual places became a bit of an issue for me.

I won't lie, I take ten days of progesterone (used to be seven) and it isn't great, but i genuinely feel like if I prepare myself for it, keep busy, warn my husband and generally make sure we're not around each other too much (sounds harsh but because he and i are so close, he bears the brunt of my mood swings etc.) then it does pass. You probably won't start feeling any different until about day 4/5 i've found.

Do let us know how you go! Good luck and Kudos to you for making that massive step to getting proper help.

xx


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 Post subject: Re: Introduction and question about treatment
PostPosted: Mon Oct 13, 2014 3:09 pm 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
ps. I felt very broody for the first three months of the treatment - apparently that's normal :) x


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 Post subject: Re: Introduction and question about treatment
PostPosted: Mon Oct 13, 2014 9:00 pm 

Joined: Sun Oct 05, 2014 1:29 am
Posts: 6
Thanks pmthater!

Do you ever take the progesterone at a certain time? As in can you change it by a few days here or there depending on whats going on in your life? meetings, birthdays etc

Also, I really would like to have a child one day, do you know if this treatment affects your fetility?
Reading stories like this http://www.pms.org.uk/home/personal_stories/story/96/
make me quite concerned. But this woman stopped taking the prog right?

I've so many questions and so much to learn!

Thank you again

Bee


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 Post subject: Re: Introduction and question about treatment
PostPosted: Mon Oct 13, 2014 9:28 pm 

Joined: Wed Dec 19, 2012 3:51 pm
Posts: 50
Ask as many q's as you like thats what the board is here for.... I take it on the 20th of each month for the first six or so months I took it orally and by chance my consultant said that some women took it vaginally (horrible word!) and it seem to lessen the side effects which I agree with so I do that way now. I tend to take the oestrogen in the morning and prog last thing at night. I think it should def be taken at more or less the same time if you can do so.

Well the treatment works by overriding your natural hormonal activity so really it shouldn't allow you to conceive. My doc has said to us, try it, as I may well be ovulating normally as well, but it's doubtful and realistically I'll need to come off the treatment. Which like the post you linked too is a scary thought. For example this month I just know for whatever reason my treatment hasn't worked and I feel pretty crap and I am worried what it will be like when I come off it altogether. We'll just have to BD like mad and hope for the best. The good news is once you come off it your fertility should return to Normal.

Im think its important to remember that the post you linked to is a very severe form of pms as well and you might not be like that, like she said there are 150 different symptoms!


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 Post subject: Re: Introduction and question about treatment
PostPosted: Mon Oct 13, 2014 9:40 pm 

Joined: Thu Nov 29, 2012 5:00 pm
Posts: 79
That story is mine Bee and it was an extreme form of PMDD I had. Everyone is different. There is a very small chance that GnRH analogues can affect fertility but this is small. Speak to your docs about any concerns you have. I couldn't tolerate ANY form of progesterone at all but that doesn't mean you won't be able to. Also, some of the ladies on here have used osetrogen and testosterone and only taken progesterone 3 or 4 times a year. No need to bleed every month at all. Chat with your doc to get best treatment for you. x

_________________
38 years old. Suffered PMDD for many many years. Had very successful treatment on GnRH Analogues and oestrogen only HRT. Had TAH + BSO 15/11/12 for severe complex atypical hyperplasia. Hopefully now completely symptom free permanently.


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