ENDO Messages for April, 2008: Re: Endometriosis in groin region

Re: Endometriosis in groin region

From: Nikki (anonymous@obgyn.net)
Sun Apr 27 15:51:13 2008

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Reply: Colleen: "Re: Endometriosis in groin region"

Hi Colleen,

There are a lot of drugs out there that are prescribed for endometriosis, and it really depends on the doctor. I went to one OBGYN that told me that I absolutely NEEDED to go on Lupron. However, I had done my research and didn't like the sound of the side effects from Lupron. Then another OBGYN told me I NEEDED to go on Deprovera, but ditto again on the side effects.

My current RE put me on continious Lutera, but I had a bad reaction to it. Finally, he put me on a combination of Femara and Aygestin. My stage IV endo was so inflamed he didn't even want to touch any of my organs at the first laparoscopy b/c he thought I would hemorrhage. After the lap, he wanted me to shrink the endo lesions using an aromatase inhibator (Femara). This worked out well except for some side effects: bone and joint pain, hair thinning, vertigo, joint locking. Femara, though, is not FDA approved to treat endometriosis, it's experimental. Femara can also cause ovarian cysts (which was why I had to have continious ultrasounds) and blood clots. Femara, however, is supposed to have less severe side effects than some other drugs -- like Lupron. But I never took Lupron so I can't confirm this. Not all doctors are able to order Femara too, since it does not have FDA approval.

Talk with your doctor about your concerns. I think the problem with progestins is that they all can cause blood clots, and a lot do affect the thyroid. It might also be a good idea to get a second opinion, or a third.

I have a rare liver condition (it's benign really), but it makes it difficult for me to metablize certain medications, so I know what it's like to worry about taking new meds. I turned yellow on Lutera -- after this my boyfriend nicknamed me Princess Banana :)

And I'm so sorry to hear about all the problems you've had. I have endo in a rare spot too (on the diaphragm). My RE told it's too risky to operate and to just leave it there, and take an aromatase inhibator. However, since Femara is not FDA approved for endo treatment or pre-menapausal women (I'm in my early 20s) I do not want to continue on it for too long. I'm concerned about the longterm affect.

I hope you can find a medication that can help your endo, and that your body can tolerate well!

Take care!

-- Nikki

At Thu, 24 Apr 2008, Colleen wrote: > >Hi! I am new to this site and I have been desperate for any and all >information. I have been on a quest for the last 5 years to figure out >what all the pain in my groin has been about. After throwing my back >out and being recommended for spinal surgery 2 times now, I finally >found a back surgeon who took the groin pain seriously. I had seen 7 >doctors prior to this all telling me nothing was wrong and I needed to >get nerve blocks. Well, the spinal surgeon agreed that the answer to my >back was getting to the pain in the groin. He sent me to a general >surgeon who is retiring soon as my last hope. This doctor studied all >my records and figured out that I have endometriosis that has gotten >outside of the uterus. Basically, I was loaded in my groin area and he >had to remove a ligament and do same major cleaning. He said it was in >my hip, pubic hair region and going down my thigh. He stated it maybe >elsewhere but he cannot be sure. I was told that I need treatment to >halt the growth of this stuff. However, this is where my problem comes >in. I threw a blood clot 2 years ago and am unable to take birth >control pills. So it has been recommended that I try Lupron. I do not >do well with drugs as I have a bad thyroid and it seems like they >metabolize very slowly in me. I wasn't able to take meds for this >recent surgery because they all made me vomit. Sooo, to make a long >story short - I am beig told Lupron or suffer the consequences of it >growing in other places or growing back. I am 38 and do not want this >drug (it sounds horrible) and I do not want a hysterectomy. Does anyone >know where I could/can turn for help and direction in the maze? I feel >overwhelmed and my condition (where the endo. is) is not well published >on the internet. I live in Michigan. Sorry for the length.

--
"Shopping is my cardio," Carrie Bradshaw

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