Danazol: Has anyone been put on Danazol to... - Endometriosis UK

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Danazol

auranya profile image
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Has anyone been put on Danazol to treat their endometriosis? I have previously tried the pill and norethisterone with no luck. Yesterday I was given a presciption for Danazol as apparently I am running out of things to try, I was also given Mefenamic Acid for the period pain as well.

My past history is that I have always had very bad painful periods with clotting and leakage, a GP when I was 17 said that it was part of life - get over it, so I have tried to cope best as I could. Two days every month I have stay indoors otherwise I leak everywhere. Last year I took up jogging and a diet, a lump appeared on my caesarean scar so I was booked in to have a "hernia" treated by surgery. Had my operation, lump removed and when I went back for a checkup was told that it was endometriosis. 6 months later and it feels like another lump has come back in the same place and I am now experienecing a lot of pain at the top of my thigh running downwards with pins & needles, stabbing pains in my right ovary accompanied by pain in the lump. Painkillers and a hot water bottle seem to be a major part of my life at the moment and it starting to really debilitate my life.

Anyway enough rambling, Danazol... How common are the side effects? I really don't my voice to change or my boobs to shrink!

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auranya profile image
auranya
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5 Replies
_Tamsin_ profile image
_Tamsin_

Sorry to hear about all of the pain and awful periods you have had to put up with! I haven't tried Danazol, I hope it is successful for you :)

Sweetie09 profile image
Sweetie09

Hi I tried danazol for 2 weeks and had 3 migraines in that time. So I had to stop taking it. What doesn't work for one person doesn't mean it won't work for you. I struggle with any hormonal tablet as they seem to increase my amount of headaches. I'm at a standstill at the minute as was on cerazette before my last lap which meant they didn't find any endo but did find a cyst on my overy. I've had to come off cerazette again due to headaches so I also have mefanemic acid tablets for the pain but you feel like your constantly taking them

Cooka profile image
Cooka

Well I personally wouldn't touch it. I'm sure you've googled the possible side effects including the blokey side effects. All I can say is my experience is that the doctors play down the side effects and make these drugs seem harmless. I was told that zoladex "might cause hot flushes and the other side effects are rare". I got every side effect out there and my life was hell :/

Danazol is different to zoladex but the side effects of any hormone treatment are nothing to be sneazed at. Please research as much as you can - especially the literature about bio-identical hormones (which are more harmonious with your body and therefore minimal side effects) vs synthetic hormones such as danazol, provera etc. There are some great books out there you can probably get at your library regarding this. Dr Sandra Cabot is an expert on this - she has a few good books regarding this. Just google her name and either endometriosis or bio-identical hormones.

Much love and well wishes xx

Pnut profile image
Pnut

hi when I had taken Danazol, many years ago, I afraid I put a 1 stone on a month I had to be taken of the drug, it effects people in different ways, but surgery all so has long term side effects, you have to do what is best for you.

jack84 profile image
jack84

Following my 1st lap 15 years ago rather than remove the endometriosis surgically I was prescribed Danazol. I took it for a year, My only side effect was weight gain I did put over a stone on. I didn't mind too much as I was underweight at that time anyway. The weight dropped of once I stopped too. It worked well for me as until the past couple of years I had no further symptoms from my Endo.

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