Hi, I am new to this forum. Don't know where to begin but been suffering a long time, first with endometriosis, then infertility/ivf and severe pms/pmt. As of last August, I decided to stop trying for baby and 'go on the pill' which I was told would stop the misery of my cycle which was 2-3 weeks (often 3 weeks) of being emotional, irritable, down, fatigue, bloating, abdominal pain, aching joints, generally feeling ill etc. The pain wasn't as bad as endo pain (since op in 2009) but it was the frequency of symptoms that started around 2010 when I turned 40 that really affected my quality of life.

Anyway, tried Cerazette (made everything worse), Loestrin 20 (made everything worse), Yasmin (nightmare), then as of November 2013, have been on Mirena coil and Estraderm oestrogen patch. Started on 50 micrograms as gp said wanted to stop ovulation but not cause endo to return. Good for about 6 weeks then symptoms returned, increased to 75 micrograms, had a couple of good weeks and then been a nightmare since. Have now increased to 100 micrograms a couple of weeks ago but what is worrying me is that I am getting endo type pains and worried the oestrogen has caused endo to return. So far, I am also getting all the usual symptoms on more or less a daily basis plus worse pains and shooting pains up my vagina and painful ovaries?! Had ultrasound for coil and it is OK.

I feel like I am going mad as I just want to shut down my ovulation, I just want to know what to take! I am seeing consultant on 30 June. On good days I feel better than the old days but the bad days are so frequent now that I am feeling worse than before trying to take medication to stop this nightmare.

What I want to know is - should I persevere? Will the 100 strength patch start stopping ovulation in a couple of months? I am gutted as this was supposed to be the year I got my life back and started having fun again but nothing seems to work.

Would anyone recommend trying the GnRH injections next? I am a bit worried about the induced menopause etc.

Sorry for all the detail - really hard to explain it all as so many symptoms and so frequent.

As you will all know, it can be very isolating.

Thanks in advance for any of your experiences you can share and I hope you all manage to get some help and success with this horrible thing we have to suffer.

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Aged 44. History of endo. and period problems. Started seriously trying to sort August 2013 with BC pills, then tried coil and oestrogen, now trying another pill. Going to try GnRH next. Suffer more with physical symptoms although mood is affected too.

Hi Landry 44

I tried many pills etc but had problems for a long time similar to you until I had estrogel to continuously stop ovulation . I also have mirena to keep womb lining thin. I'm 42 so treating severe pms not menoupause
I'm using gel not patch so I don't know the comparable amounts but the low dose I started on 0.5mg and 1.0mg didn't over ride and stop ovulation until my gynae uped it to 2.0mg . The lower doses made me feel exhausted on top of pmt and everything else. Since the 2.0 mg i have been pms free. It's not without its complications and I have been experimenting with the dose. All I know for me is that with any tweak I do get initial ovary pains and I can remember it feeling a bit worrying but it always passed. I also got other symptoms but they did all pass eventually. I've consulted my gynae so many times to get the dose right and still perservering and determined to get it right. I have mild endometriosis so understand your concerns
Perhaps someone else can give you some info about dosage of patches as I don't know. I'm glad I persevered as the bio identical estrogen has stopped any cyclical progesterone being produced which made me poorly and has its own well being benefits too like thinking more clearly etc etc
This is just my experience and not in any way advise
Good luck with your next consultation

Hi Juliettes

Thank you so much for your reply and information. It really helps, especially around state of mind and keeping positive and hopeful! The other night I was feeling neither of those!

Your experience is really interesting. Did you also get endo-type cramps? The shooting pains up my vagina are very strange and have happened since a week after I had the coil fitted. I could have it re-fitted but it was so painful to have inserted that I keep thinking I will give it a bit longer and see how it goes.

I will ask my GP and consultant, but it sounds like you may be on twice the dose of oestrogen that I am on i.e. I am on 100 micrograms but you are on 2 milligrams which is interesting. I may also ask about swapping to the gel as the patches are OK but leave big squares of black adhesive marks on the backside from underwear!!

When I posted I was feeling desperate and was thinking I need to get on the injections asap. Now I am feeling that I may try a higher dose gel and see how I get on so thank you, you have given me some hope.

Do you mind me asking how long it took for things to settle down? I have been on patch/mirena combo for over 6 months now.

I am really pleased that you are feeling better with everything. I take it you don't get periods at all now? My bleeding has stopped more or less completely which is the irony really, considering I feel 'due on' almost every day at the moment!!

Thanks again and let me know how you continue to get on. I was ready for a hysterectomy lately at my worst points!!

x

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Aged 44. History of endo. and period problems. Started seriously trying to sort August 2013 with BC pills, then tried coil and oestrogen, now trying another pill. Going to try GnRH next. Suffer more with physical symptoms although mood is affected too.

Hi Landy

I had six months trying the lower estrogel feeling pretty bad . Then once uped to 2mg sachet of Sandrena i had one bad period and the next one was pms and migrane free and has been since. It sounds strange but i could always feel low level pain in my womb and bladder and this took over six months to subside.

I had developed quite a long list of symptoms by the time i tried this and was pretty much at jumping off point and was a hysterical wreck and sobbed my heart out when i first saw my gynae . pleased to say im a different person now


It took me a long time to find a specialist that could help (8 years). I had to see someone privately to get the help that worked. I found that the doctors I saw for endo fibroid dont do the hormone side of things. Just wish i'd known where to go earlier on as its years of my life wasted. A nhs pms specialist told me I could only have gnRH but i wanted to try other things first as it seemed so drastic

I already had mirena inserted when I had laporoscopy for endo investigation. my endo is mild and I have fibroid I thought these were the cause of pain for 2 weeks prior to period but not so sure now. The mirena also made my periods hardly there but i still ovulated so this might be what is happening to you

i recently had a trial of progesterone pills and all my pain came back so i can conclude for me that hormones can cause pain as well as organic issues.

I had my mirena ooch! renewed this week and got deep period pains in my womb and back but gone now after a few days but felt very sorry for myself for a few days

Have you got a good doctor with pms and hormone knowledge?

Hi again Juliettes

I am glad things have settled down for you again since your new Mirena - they do hurt going in don't they?! That is why I am putting off having mine changed to see if it will settle down.

You do sound like you have been on a similar journey to me. I have had problems for years but was avoiding treatment for the pms symptoms as was trying to get pregnant. However, I did have treatment for endo. I was actually endo-free last June so fingers crossed the bad pain is not that returning!

I am a bit confused now about the dosage of oestrogen. Looked at my patch which gives an absorption rate of approximately 100 micrograms per day (the patch actually contains about 3000 micrograms but you only change the patch twice per week). If you are on 2.0 mg, does that mean it is 2000 micrograms per day? I must have got something wrong here as that seems an awful lot? I am guessing you are on an absorption rate of 200 micrograms per day i.e. double the dose I am on, does that sound right? Do you use the gel daily? I just wondered if you would be able to clarify as I want to email my GP to see if she would let me try it. I can't get to see her for about 3 weeks! Funny that you say you went private too, I am thinking the same! My consultation is at the end of June but it is with my endo consultant and he is the one that put me on Cerazette. Even my GP said she couldn't understand why he did that as the mini pill doesn't stop ovulation. My GP is OK and it was her that put me on mirena and patch but it took a long time for her to take me seriously. If she won't up my dose, I think I will go private. I have already emailed someone and she can see me on 7th June. I just feel desperate to get sorted by Summer and don't want to waste more months if this patch is not going to suppress my ovulation.

Sorry for all the questions, I really do appreciate it!

I hope you are still feeling much better after symptoms of new mirena have calmed down. Like you, I am hoping to avoid injections for now if I can find some balance with the coil and oestrogen. Think I could do with testosterone for libido and energy too!

Thanks again x

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Aged 44. History of endo. and period problems. Started seriously trying to sort August 2013 with BC pills, then tried coil and oestrogen, now trying another pill. Going to try GnRH next. Suffer more with physical symptoms although mood is affected too.

Hi ladies, do you think either/both if you may benefit from expert advice from any of the naps specialists? You are able to ask any questions you have and they email a response to you. Well worth becoming a naps member for this service alone ( not to mention helping naps to keep their services available to so many women). There's a tab on one of the other pages on the website which will tell you more. X

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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.

Hi Pmddsurvivor

Thanks, I may well take a look and consider joining.

Do you know of any success for ladies trying to suppress ovulation with only 100 micrograms patch or do most need more?

Thanks.

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Aged 44. History of endo. and period problems. Started seriously trying to sort August 2013 with BC pills, then tried coil and oestrogen, now trying another pill. Going to try GnRH next. Suffer more with physical symptoms although mood is affected too.

I'm afraid I don't know what dose is required for this but Nick Panay is one of the experts and he uses this treatment all the time so I'm sure he'll be able to answer you. He also wrote the NAPS guidelines for PMS which are available to members too.

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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.

Thanks very much for the info.

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Aged 44. History of endo. and period problems. Started seriously trying to sort August 2013 with BC pills, then tried coil and oestrogen, now trying another pill. Going to try GnRH next. Suffer more with physical symptoms although mood is affected too.