Endometriosis Support Group

I'm currently on Danazol. My Dr. put me on it after my laser surgery in April. The first week on it I felt Nauseous, very tired, and had hot flashes. But it went away after a week or so. The only side effects that I recently experienced about a month ago is acne on my chest and minor skin rashes. I also gained about 10 pounds and my appetite has increased. Other than that I'm good. My dr also do an internal exam on me every month to see how well I'm responding to the danazol. So far so good and I will be finish the danazol in October and we will start my fertility treatment as soon as my cycle returns. Hope this helps good luck on becoming pain free!!!!!!!!!!!!

thank you! The gaining weight is one I hope to avoid! I just lost 45 pounds that I had gained from years of going back and forth on DEpo Provera and Lupron! I am really tired...didn't know it could be related to that so that is good to know. Haven't started hot flashes yet...but had them with the Lupron so I know what to expect there. Thanks so much for your reply! I wish you all the best!
Christine

hi hun i hope you have better luck than i did with this. i had all the side effects lol i hated every minute of it. it changed the way i thought hated it, now i am on female hormones and i am crying at the drop of a hat lol so dont really no witch one is worse lol. good luck to you hun and take care xxx

When my gyn gave me the choice of Lupron, Danazol or seeing an endo specialist, I chose the specialist. Had a lap, and was put on continuous bcp (progesterone only) and nortriptyline as a pain blocker.. it worked wonders for me. To be honest, after talking to alot of women who have endo and who were on both danazol and lupron, i was glad I chose not to go on either. I know it does work for some, and I really hope you are one of the lucky ones!

I have been on Lupron 3 times and had side effects but it wasn't terrible. There are no trule specialists around here...so I have to do my own research and a lot of trial and error. I am really down to no more options. I can take no kind of birth control that has any amount of estrogen in it. Lupron was too expensive and the third time I was on it it didn't work. Plus there isn't any research on how it effects future fertility. Depo provera was ok for me but then I found out that I was being given a three month dose shot...every 28 days. I thought all along that it was a one month dose...until I switched Dr's and asked for the one month dose and they told me there was no such thing! So I tried Depo again but this time had a lot of side effects...they weren't terrible but it seemed pointless to endure the side effects when I was still in pain...and also bleeding 24/7. So danazol...this is the last thing. After this I will probably have my second lap....but there will be nothing else to do but pain management.

I really feel for you. I have estrogen dominant endo so I cannot have estro of any kind as well. My gyn had put me on estro about 7 years ago and it made me crazy. I was literally psychotic and was having way more pain on it then I had previously. I ended up sticking with my specialist and vowed never to see my gyn again (she had caused alot of damage during my first lap as well.. took out a grapefruit sized tumor from my left ovary and ended up leaving a small piece of surgical sponge inside me and my left ovary ended up getting covered in scar tissue so thick that they could not see it on a scan... it was attached to my pelvic sidewall.)

Low and behold, I was blessed to become pregnant last year, and to my horror, when I was in labor the doctor on call that night was the same gyn!!! She pushed me for a c-section and there was no way in hell I was going to let her cut me open again. As it is, she effed up the episiotomy and now I will probably need surgery to repair that!

OMG! So did that Gyn deliver your baby?? Your baby is gorgeous by the way! Yes that is what I have too...estrogen dominant endo. My body makes a little too much estrogen too...all of my PMS symptoms fall under the estrogen side...only one under progestrone! So adding even the tiniest bit of estrogen makes me psychotic! I am so sorry you had to go thru all that with your surgery and such. I am happy with my Dr in that reguards. I am starting to get a little irritated with her....but I can't really figure out of it's her I am irritated with or just this disease.
I have been on the danazol now since SAturday....and I started having minor hotflashes yesterday....today I am having terrible stomach pain. But my normal endo pain is barely noticable. I had a massage yesterday and I am kinda sore from that....although the soreness was well worth it!

unfortunatly yes that gyn did deliver my baby. She was such a you-know-what. She kept telling me that the baby was not coming out and that she could not see the head (without even looking!!! she just wanted a quick c section so she could go home!) yet everyone else COULD see her crowning.

As for the massage, I am a trained massage therapist and you are NOT supposed to get a lower back or lower abdominal massage with endo as it can push the endo all over if it is free floating. Be careful hun! I know how much a good massage can help, but its not always worth the risk.

I've been on danazol, Lupron, high doses of both progesterone and estrogen...... If I had to go on one, I would do Danazol again. I had minor side effects. Trouble sleeping and a little depression (probably from lack of sleep) were my worst symptoms. Think positive.

Ive been on Danazol for a little over 3 months with 3 more to go... and it is a rollercoaster ride for sure! It will really help if those around you know what youre taking so that they can help you through. I have alll the side effects.. from mood swings to night sweats to hot flashes a little weight gain, acne irritability and even my way of thinking.
I miss being my carefree self but at least im pain free for now... I was having to take pain killers everyday just to make it through. If you can bare the side effects it really will help you. When it got to the pain being so severe the only option I had was to turn my estrogen off. My breast size has also decreased. Bummer i know but my friends and family all know what im going through so they help to disregard some stuff that i may say without thinking because of a sudden mood change. You can do it!