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 Post subject: Fellow Sufferers Experience of Treatment?
PostPosted: Tue Dec 11, 2012 9:18 pm 

Joined: Thu Dec 06, 2012 8:45 pm
Posts: 11
Hi there,

I would like to ask anyone who is on this forum of there experience of medical treatment and what they feel has worked and helped them? I find it really helpful reading others experiences to help me make an informed decision and it also helps me not feel so alone and 'insane' as I currently do now waiting anyday for my period to come before my head blows off my shoulders lol.

Although I believe I have suffered severely for some years with PMDD and in the meantime been diagnosed with a wide range of mental health disorders - the penny then drops when they start to investigate my hormones - so I am new to the world of medical treatments.

It has been suggested I try GNRH Zoladex or HRT Estradiol Patch with Uterogestan (Progesterone Pills)

Unfortunately I have over-researched and I am now freaked out by the side effects and feel in a position where I don't want/ am too scared to make things worse so I live with the two weeks/over a month nightmare that I am in now and I know is not the way forward.

Is there anyone willing to give feedback on either that you can give me off the above or different treatments in terms off side effects / how you felt during treatment?

Also would you mind me asking you where you are treated? I live down South and I literally begged my GP bombarding her with info on PMS/PMDD to refer me to the Chelsea and Westminster.

I also have a hormone imbalance linked to PCOS - I wonder if this is a common ground with anyone else?

Anyone who is willing to comment would be greatly appreciated, I hope we can help eachother.

Good Luck to all of you on your continuing mission to be well, we deserve it :)

Very Best Wishes

xxx


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Wed Dec 12, 2012 2:22 pm 

Joined: Fri Nov 30, 2012 11:11 pm
Posts: 3
Hi Princes 8338, welcome to Naps :)

I currently have a similar injection to Zoladex. I have been on it since May and find it works really well - it shuts down your ovaries so they aren't producing any hormones and that fixes the PMDD symptoms. Unfortunately it does mean you have menopause symptoms instead. The Estradiol Patch you have been prescribed is to help reduce the menopause symptoms and also to protect your bones (or you would be at risk for osteoporosis). If you are adding extra oestrogen into your body then you also need to add some prosgesterone to protect the lining of your womb - that is why you have been given progesterone pills. Together these are called "add-back HRT".

There are lots of different ways to obtain the add-back HRT. The patch is just one and there are a couple of different brands of patch. I use Oestrogel - it comes in a pump dispenser and I put a squirt into my hand and rub it on my thigh. It is easy to adjust your dose according to how much you use. My Gynae has just asked me to increase from 2 squirts per day to 3 per day. The progesterone is always a difficult one. Lots of ladies find that the progesterone can give them a few problems but there are ways round this. There are progesterone pills which are taken for 1 - 2 weeks per month, or there are pessaries (again a week or 2 per month) or you can have a Mirena (coil) inserted. Obviously that stays in your body all the time but the progesterone is released directly into your uterus and in most people is not detectable at all. I have had a Mirena for over 10 years and as a source of progesterone it didn't give me any trouble at all.

I don't get any side effects at all most of the time because the oestrogen cancels out any menopause symptoms that I might otherwise get. If my oestrogen levels get a bit low then I do get very dry skin and hot flushes. For a while I had really itchy skin - that was a menopause symptom but an antihistimine solved that.

What exactly is it you are concerned about - the GNRH, the oestrogen or the progesterone or the whole thing?

The best thing to do is get your referal to a PMS specialist and then talk through all your options with them. GNRH injections are often the last thing to be tried. Have you had any of the other treatments? Sometimes specific types of the pill can help or using just oestrogen to fool your body into not ovulating. There are lots of documents on here that you can read.

Good luck x

_________________
I'm 36 and have had PMDD since my teens. After years of fighting for treatment I'm finally having a TAH & BSO on 15th January 2013! Currently having monthly Gonapeptyl, Oestrogel & Testim.


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Wed Dec 12, 2012 11:00 pm 

Joined: Thu Dec 06, 2012 8:45 pm
Posts: 11
Hi Ginger,

Thankyou ever so much for your reply I really appreciate it.

I've had 16 views and only 1 reply so far - I am sure more ladies have an opinion - Girl Power - how to get by with a little help from our friends ;)

It has been suggested that I try either Zoladex or HRT and Uterogestan (Progesterone - tablet form). I was not aware that I would have HRT with the Zoladex but this would make sense.

I am scared because I am scared of making the symptoms worse which the consultant suggested might happen. I am scared as this seems 'dangerous' and I don't want to add to the 'out of control' feelings I go through. At times it feels I am teetering on the edge and I don't want to go over I am sure you can understand where I am coming from.

However last night I had a mighty row with my other half - told him to get out, I hate him etc (how awful :( I hate myself for doing this!) and this morning I bleed - how guilty do I feel so I know I have to do something!

I have tried various antidepressants and contraceptive pills of which gave me the almightiest migraines so these seem the next option although I do beg for a hysterectomy to get this over and done with!

I am under Chelsea & Westminster originally seen by


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Wed Dec 12, 2012 11:05 pm 

Joined: Thu Dec 06, 2012 8:45 pm
Posts: 11
...

(Sorry about that)


Also where I can find the information on here you suggested as I am not paying member?

Also if in a relationship, have you seen an improvement with the treatment you are on?

Thanks again for your support and advice.

Very best well wishes to you

xxx


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Thu Dec 13, 2012 11:56 am 

Joined: Fri Nov 30, 2012 11:11 pm
Posts: 3
Hi Princess

I had forgotten that the documents are all members only - sorry about that. You can read the personal stories section on the main PMS website I think. Google is a great resource as well. We aren't allowed to put links on here as the charity has to be careful not to promote a specific Dr or Drs. If you search using "Premenstrual Syndrome" "PMDD" "Hormones and Depression" then you will find some good pages.

TAH & BSO = total abdominal hysterectomy with bilateral salpingo oopherectomy. It means that I am having a hysterectomy and my ovaries and cervix will also be removed. The operation will be abdominal surgery as I am not a good candidate for vaginal or laparoscopic surgery. If you ever reach the point of needing surgery make sure they take your ovaries out as well!

I really do understand what you mean about making things worse, it's very scary. I put off having the injections for over 6 months because I was so scared. Nothing else worked though and I was in a really bad place so I figured there was nothing left to lose - best decision I ever made! My Gynae told me that you can reduce the initial side effects by having the first injection during the first 5 days of your cycle. For me that worked. At one point I had a break in the injections and when I restarted them it was in the middle of my cycle - it was awful.. I felt much worse for a couple of weeks, but it passed and I soon felt great again!

You don't always get HRT with the Zoladex to begin with. The Dr may want to see you settled on the injections before introducing anything else. That means you will have menopause symptoms for a while but those are usually easier to cope with than the PMS/PMDD symptoms.

Don't get me started on relationship problems and feeling guilty... I threw my poor hubby out, screamed at him every month, I told him it was over so many times. In the end we went to Relate and it was with the counsellors help that I managed to get a referal to a Gynae and start sorting out the PMS. We have been so much happier since May, it is amazing :) Don't get me wrong, we still argue sometimes but it is for specific reasons now rather than me just going off on one.

_________________
I'm 36 and have had PMDD since my teens. After years of fighting for treatment I'm finally having a TAH & BSO on 15th January 2013! Currently having monthly Gonapeptyl, Oestrogel & Testim.


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Thu Dec 13, 2012 10:09 pm 

Joined: Thu Nov 29, 2012 9:14 pm
Posts: 8
Hi Princess

Welcome to Naps, its is a lifeline, was to me last yr when I found it :D

So I have had yrs of suffering, yrs of plucking up the courage to visit the GP and sadly to be told 'it's part of being a woman' HOW RUDE!!

I had already tried, vitamins, evening primrose & starflower etc, diet and excersize, meditation and relaxation. GP offered me prozac 2yrs ago and initially I was horrified, very definate that it was NOT what I needed! Then on another month of anxiety, anger, misery, I figured what did I have to loose? Amazingly I had the best month ever 1st month, even managed the family holiday to Ibiza with the in-laws on pms week! wowser yes yes yes this drug is amazing!!!!!! Sadly the effects became less impressive over time, within a few months I was pretty much back to square one!

Queue Naps and my path to happiness! First thing I did was clarify to myself that I was not alone, and not a mad horrible cowbag! I referred myself to a specialist and was seen about 2-3mths later, all the while I was charting my symptoms, which as simple as it sounds was a really powerful tool. Despite the fact I know I have suffered for over 20yrs just seeing it in print made it painfully clear.

First line of treatment for me was to start monthly analogue, in my case monthly injection of Prostap which shut down my ovaries thus no release of any hormones = no vast mood swings,yay! This however has to be accompanied with HRT and in general its a mixed hrt with both oestrogen and progesterone in it to protect both bones and womb. Here comes my 1st problem, the side effects I had were palpitations, shortness of breath, very erratic mood swings and generally I had swapped my 2wks a month symptoms for every week of every month just not knowing! So I had 3 different types (2 tablets and 1 patch) of combined HRT during this time and after about 5 months I decided to give it up and go back to au natural. Big Mistake! The thing that happens is when you have stopped periods for a while and are not experiencing such huge peaks and troughs in mood etc you forget how bad it was. Queue the return of my cycle and even worse pmdd, now Im having suicidal thoughts, terribly low dark moods, impatient with the kids way too often, poor hubby never knew who he was coming home to.

I made an appt with my specialist in June and she clarified that I am very sensitive to progesterone (as many naps members are) and she offered me to re start the monthly prostap but use oestrogen only HRT. Great Im thinking no evil P!! However as I still have my womb and ovaries I need to take progesterone every 3months to force a bleed thus protecting my womb. I am due to take my prog tablets for 2wks in Jan, NOT looking forward to that!

So where am I at now????? Well I cannot recommend my current treatment enough :D I was understandably hesitant before re starting treatment due to my 1st encounter BUT it is awesome, has changed my life it truly has (right now anyway). Hubby has commented on it too, a fairly placid wife is a preferred choice!

Good luck with your treatment and don't worry if things don't go to plan 1st time, they rarely do. Naps is the perfect place to come and share.

_________________
Pms-pmdd sufferer for over 20yrs. Tried several natural therapies and medical ones for years. Total hysterectomy and oopherectomy 15.8.13 I'm FREE!!! On oestrogen and testo only now, life has begun :)


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Sat Dec 22, 2012 5:42 pm 

Joined: Fri Nov 30, 2012 9:50 am
Posts: 17
I have suffered with pmdd since I was 14 and Im now 48. Ive had various doctors try progesterone treatments over the years but nothing worked. No supplements or healthy diets worked either.

Finally, I was not only getting pms symptoms but my menopause had started to kick in and I was having hot flushes and other uncomfortable meno symptoms. I could stand it no longer and paid to see a specialist gynae who I knew had helped other Naps ladies. He started me on 4 pumps of oestrogel a day, a quarter sachet of testogel every other day and 7 days of norethisterone. This changed my life. No meno symptoms any more and I got back my love of music and books as well as my sex drive! I still get some pms symptoms but not as bad as I used to get and some period pain. Im going to try the mirena coil in January to see if this suits me better. I have decreased to 2 pumps of oestrogel and a pea-sized blob of testogel every day too. My oestrogen is a bit too low on this but I get other symptoms if I increase to 3 pumps so its hard to get it right.


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Thu Feb 07, 2013 10:09 pm 

Joined: Thu Dec 06, 2012 8:45 pm
Posts: 11
First of all ladies apologises for the delay in replying and thankyou so much for your replys, the information you have given me is invaluable and very helpful.

GINGER - How did you get on with your op? Hope you are well on your way to making a positive recovery and you are feeling much better :)

Bright Blessings - Sorry I replied to the other post asking questions you seemed to have answered on this one - whoops! Your first line of treatment sounds, well horrendous! How did you get on with your 2 weeks of Prog? Hope it went better and you are still feeling fab :)

Thanks again ladies for your replys I really appreciate it XXX


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Thu Feb 07, 2013 10:11 pm 

Joined: Thu Dec 06, 2012 8:45 pm
Posts: 11
Crystal - Sorry I missed you off my appreciation list I only noticed your comment when I scrolled down further - thankyou very much indeed for your reply too!

How are you getting on, with the Mirena?

XXX


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 Post subject: Re: Fellow Sufferers Experience of Treatment?
PostPosted: Thu Mar 14, 2013 3:31 pm 

Joined: Fri Nov 30, 2012 9:50 am
Posts: 17
Hi, Sorry I haven't been on here for a while. I must admit I was worried about trying the mirena because it meant a constant supply of progesterone, so I changed my mind and didn't have it put in. My gynae in london suggested I use utrogestan internally (it can be used orally or this way) and I thought if this works then I may try the mirena. Its supposed to have less side effects if you insert it as the progesterone is kept locally.

However, I had the most horrendous bout of pms after doing this and so I am not going to try the mirena. Im not saying that other women should do the same as me because we're all different. Some ladies suit one type of progesterone and not another, so please don't take this post as a for or against any type of treatment.

Don't worry about missing me off the appreciation list, princess! Thats how these forums go - we all miss posts. I didn't notice to be honest! Hope you're ok. xxx


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