|
Re: Endometriosis in groin region
From: Colleen (anonymous@obgyn.net)
Wed Apr 30 10:54:58 2008
At Sun, 27 Apr 2008, Nikki wrote:
>Hi Nikki, thanks for the response. I feel very alone as I have been told how "rare" it is for it to break out of the uterus area. I have seen my GYN and she wouldn't look me in the eye after I presented her with a surgical report. I am currently waiting to see a new doctor but wanted to find more info. on the other drugs and being I have the blood clot history, I think it presents a major problem. I have been dubbed "gene defect" so I understand the banana comment totally. I appreciate the info. on the other drugs, I will look those up. Have you found any info. on what happens when the endo. gets outside the uterus? I feel knowledge is power and currently I do not have anywhere to go to get this info.
Thanks for sharing your story, I am glad that you shared your endo.
location with me.
Take care,
Colleen
>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
>
|
|
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)