What comes after the pill?: I am not sure... - Endometriosis UK

Endometriosis UK

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What comes after the pill?

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I am not sure how long exactly I had endometriosis for but I started taking the pill for it last year and I was on a three-monthly cycle. it worked for 3 month and then I got worse. I had a laparoscopy in november and they found adhesions on both my ovaries and extensive scarring. They divided the adhesions and lasered off the scar tissue. I was fine for about one month but then the pain came back. I have been put back on the pill now (microgynon 30) and I have been taking it for almost a month. I am still getting terrible cramps and I am nauseous almost constantly. If this isn't working what other options do I have? I'm 23 years old. I don't want the mirena coil as everyone I know that has tried it had problems with it, including it dislocating and having to remove it with surgery.

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Impatient profile image
Impatient

I think you are confused about terms we use on this forum. Or you haven't made it clear in your post. hormone therapy is more commonly used to refer to GnRH agonist drugs which are very powerful chemicals that stop part of your brain working and put you in to menopause while you are on them. They are chemical castration drugs used in men and women, usually those fighting Breast and Prostate cancer, but often used in women with endo.

endometriosis.org/treatment...

there are numerous side effects, some get very severe and some never stop. These are cancer treating hormone drugs. A darn sight more powerful and more expensive than birth control BC or menstrual control drugs will be on most women..

These are an option once birth control drugs are no longer effective.

BUT BUT BUT.they are a short term temporary drug treatment that does NOT cure endo and must be taken for just a few months at most otherwise you face long term serious health problems. They cost about £500 per patient each month or more to the NHS.

They are over prescribed by doctors, who have a vested financial interest in promoting them, when surgery to remove endo lesions where possible is the best option for tackling endo, these drugs are a quick temporary fix, because they often reduce the levels of pain and do stop periods at the same time.

However with the right painkillers and other forms of menstrual control, there is no need to be on these GnRH drugs for most women.

I would suggest you possibly try having a mirena coil fitted to see if that can help with period control , it does take a few months to kick in, and it is easily removed if it doesn't suit you.

It does not suit everyone, but the side effects of mirena should be a lot less than GnRH drugs, and the risks of long term problems greatly reduced too. Personally speaking the Mirena doesn't give me any side effects other than it hs stopped my periods and period pain cramps which has been utterly life changing and wonderful.

You didn't say if your op was just to diagnose, or did they actually do any work on cleaning you up inside? Did you have the endo removed or lasered back? did they cut away the adhesions (though this is a temporary measure as they will regrow.)

At your age, finding the right balance between pain killers and temporarily controlling your periods is the main task, in order to preserve fertility.

The GnRH drugs could offer you a few months of that, but no more, and when you stop them you are back at square one again. There is also a minute risk that they shut down you ovaries for ever. Which at your age is the last thing you want.

The mirena if you can tolerate it, has a life span of 5 years which is the longest lasting of the medical options apart from having all the endo surgically removed, which is not always possible.

If you are getting cramps, rather than continuous pain, it does sound to me like you do need to get your periods sorted as it is the menstrual period that is usually accompanied by cramps and stopping that would obviously be very helpful.

If you want my advice it would be to give the Mirena a serious consideration, if for no other reason than it does give up to 4.5 years of relief from period pain.

GnRH drugs are only to be used as a last resort in my view, because they can be really tough and can only be used for a short time.

There are other birth control implants to consider too, and Mirena is a birth control implant not a hormone therapy treatment.

in reply to Impatient

Thanks for explaining al this to me. I don't know anybody with endo so I am not clear on all of the terms yet. My lap was to diagnose, but when they looked inside they found adhesions and scar tissue so they carried out adhesiolysis, and lasered off the scar tissue ( I think). I don't feel safe having the mirena coil as I know too many people who had problems with it, including it dislocating. Also that will give me about 5 years pain free, but the fertility specialist at the hospital who consulted me after my lap told me that if I do want children I shouldn't take more than 2 years to sort out my life (career, marriage, finance) so I guess I just can't delay it for 5 years. But thank you so much for all the help and information.

winey profile image
winey

hello. i was diagnosed with endometriosis and poly cystic ovaries in December 11. i had my endo lazerd off, my tubes drilled and my bowel was stuck to my womb. i was put on the pill which really didn't help the pain at all. So i opted for the depo provera injection. the 1st one was brilliant. it stopped my periods for 3 month's and all pain in the womb was gone, however the second injection didn't work that well. i bled through most of it so all the pains started coming back. I'm now on the 3rd injection and the cramps are excruciating. not interested in the coil at all, Ive had problems with that in the past. i have also tried the implant but it didn't agree with my body, i b led for 6 months straight. I am now going to the doctor to refer me to a gynaecologist to see if my back pain is connected as it all started at the same time. Good luck, x

in reply to winey

Wow, thank you so much for sharing all this, I am going to research the depo provera and think about it. I also get really bad back pain (lower back), they are so bad sometimes I can't pick up things from the floor or stretch, and I was told it was due to my endo. I really hope you start to feel better soon. x

winey profile image
winey

im the same, i get the pain in the lower back. and down my legs. ive just been referred to a gynecologist as doctor is fobbing me off and saying back pain isnt connected so im hoping the specialist will help me. it takes a yeah for the injection to get into the system properly but hopefully will help. however if you have any endo that hasnt been lazerd off it wont help the pain at all. ood luck. x

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