Houston Endometriosis support groups?
January 27, 2010 11:52 AM   Subscribe

I'm looking for a specific type of support group in the Houston area or online. I will even just take therapist recommendations and advice. Has to do with Endometriosis, IVF, twenty-somethings, that kind of thing.

I posted before about the possibility of Endometriosis and surgery and now I'm just trying to get it into my head or prepare myself for whatever comes up. I thought I was fine with everything and now I'm not. This week even though its only Wednesday I've been completely depressed, very angry, don't want to move, don't want to work, no energy but even when I do, I don't feel well enough to do much.

This past July/start of August I started feeling worse and I haven't really felt well since. My health was always pretty stable. Just minor colds minus that week out of the month. Now it's not and I can't handle it well right now. Besides not handling it well mentally, physically its not going well. I changed my diet completely with no change. No OTCs work, I was given Darvocet and it didn't do anything but piss me off. I have Vicadin now but was advised not to take it while working which is 12 hours out of my day. I'm miserable.

This past Friday my Dr and I talked about surgery and I'm planning to have it soon. So thats new for me. I've never had an IV and have never actually been in a hospital for myself. I'm a little freaked. It is outpatient (laparoscopy) but still. The recovery and time off work also get to me.

I have another Dr's appointment this Friday to check my ovary again since it will have been two months with no real changes in pain. I've been getting pains in the other side as well so I'm worried. My Dr. mentioned that if anything was wrong with it during surgery she would leave as much as she could if it was that serious. That really hurt to hear and I find myself not yet able to focus on the positive which is that nothing is in stone right now.

This has made me start thinking even more about children, what would I have to do, etc. So I'm looking at IVF and other methods of assistance. I know its soon and we don't know anything and I also know that it is possible to have a child with one less ovary but I like to know my options and want to have time enough to really think about everything if I do get to that point. I'm also not sure how to cope with the thought that if both ovaries have problems that I don't get my own kids biologically. Not the biggest deal but it would still be a loss. I try not to think about possibilities but its hard.

I'm in my early 20s, don't have family or friends who have done anything IVF/ART related, its not common and I'm not married so I have no one to even discuss the option with. I do want kids, always have planned for them, and am trying to be stable because of that, just got my house, working on a job change, that kind of thing. I brought it up to my mom and sisters and they're fine with the idea but its not the same. I don't have anyone in my family who has this health problem diagnosed. Many of the ones my age don't even really have cramps so I'm the odd one out. My mother had something of the sort but never sought treatment while an aunt has PCOS.

I write it all down a lot but I feel like I'm imposing if I say more than that I'm just not feeling well. I keep it a little lighter than it really feels and even with all that I feel like I'm in the middle cause I still don't know which way I'm heading. That maybe it could be something simple and I'm making it into more. I can't really help it right now but really wish I knew how.

I've gone online but it all falls into categories that I've found and I don't really fit. I admit I don't have many sources so there may be some I don't know of. There's older women trying to have a child while single (may have endo or something else) younger girls who are married and having kids, couples having IVF, a mixed bag of women with endo. I know I can learn a lot from these women and do but I need to see people my age (20s) who are dealing with endo or reproductive problems and wanting children, who are single though married is fine too. I don't that that exists anywhere due to it being specific but I thought I would ask. Being around people my age who are dealing with an issue like this is the main thing.

I'm already planning to seek out a therapist but I'm willing to take recommendations preferably someone in Houston who can help with possible fertility related issues as well.

I guess thats it. Thanks.
posted by grablife365 to Health & Fitness (4 answers total)
 
Endometriosis Association, Texas
Groups endorced by the Endo Research Center (perhaps check out the List Serv called "Girl Talk" for women dealing with Endo who are under 25).

Both of these sites also have a lot of resources. You might want to check out some other areas of the site to get some ideas about what questions would be good to ask your doctor about surgery, and for general information.

I've had the surgery and it did wonders for me, pain-wise. The recovery took longer than expected (about 3-4 weeks to feel fully functional for things like working), but I had extensive implants and scar tissue. I think it would have been less recovery if I'd had less removed.

I know it seems like a lot right now, but the thing about endo is that they don't know what they're going to find until they're in there. The amount of pain doesn't reflect the severity, and so it's really hard to guess whether there are going to be fertility issues or not. I would recommend that you figure out if there are any conditions or treatments under which the doctor would have to do something during the surgery to help you get IVF/ART later. Make sure you sign whatever release forms ahead of time so *if* she has to do something then the decision is already made. Then, try not to worry about it, and don't do a lot more research on it until afterwards. You will know a lot more about what kinds of stuff you should be researching/preparing for after the surgery.
posted by carmen at 12:30 PM on January 27, 2010


For just a general therapist recommendation, my friend with similar issues went to Karen Pennebaker, (713) 877-1114, and really liked her because she's quick and creative. She (or any other therapist) may have ideas for support groups too. I'm sorry you're going through this.
posted by *s at 3:10 PM on January 27, 2010


When I underwent IVF, this site was fantastic. They have groups and message boards based on different demographics like age, diagnosis, location, cycle starting dates etc. You could probably find some good recommendations there. Best of luck!!!
posted by hollygoheavy at 6:47 AM on January 28, 2010


Thank you for the answers.
I am looking into everything right now, will be calling Karen soon. Thank you.
posted by grablife365 at 1:03 PM on January 28, 2010


« Older Does Ted Turner have a VERY large fence?   |   Firefox keyboards, É? Newer »
This thread is closed to new comments.