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jah · Dooney & Bourke

Endometriosis

HeatherLynn · Gucci

I work with two individuals who have it. Both had to have hysterectomys. Girl A's started off with the pain not being too bad. She was told it would only get worse so she had a hysterectomy to prevent further pain. She already had two children so it wasn't as much of an issue for her. Girl B's was very severe and she is young. Only 24. She also had a hysterectomy and just adopted. IT was very, very tough on her- emotionally and physically.

My mom has it, but her case is slight and she has not had a hysterectomy. However, she was told that the pain will only continue to worsen and she will need to have on eventually.

I know this isn't what you wanted to hear, but I just wanted to share my very limited experience with it. I have heard that it is very painful so I feel for you. Did your doctor suggest alterative options to a hysterectomy or is that the only option to relieve the pain?

jah · Dooney & Bourke

HeatherLynn wrote:

Did your doctor suggest alterative options to a hysterectomy or is that the only option to relieve the pain?

I just found out this week. My doctor has indicated that I can try some "spot-removal". He used much larger terms, but that is what it really is, surgery to remove some of it, but because at this point it appears to be bad, he doesn't think that is a long term solution (it comes back anyway). He also doesn't think this will address the pain and that even without a hysterectomy my reproductive ability is seriously in question.

That being said, this is a new doctor, so I am going to get a second opinion and a more thorough examination from another doctor next week. I didn't feel that comfortable with the doctor that diagnosed it. He was a bit to "matter of fact" about it to me.

-- Edited by jah at 21:55, 2006-04-09

halleybird · Hermes

I am sorry, jah.

my stepmom had/has very severe endemetriosis. She didn't discover it until she tried to get pregnant. They recommended a hysterectomy too, but she really, really wanted kids, so she went through several surgeries and medications. She did finally get pregnant with my youngests sister, and then she had a hysterectomy.

I have pretty limited knowledge, but if you have any specific questions, you are welcome to PM me and I will ask her. She did a lot of research on the condition.

NCshopper · Hermes

Definitely go in for a second opinion. Ask your friends and family if they have a OB/GYN that they'd recommend so hopefully you can find a doctor that you feel comfortable with.

Other than that, I don't have too much to add. I feel for you though. It sounds painful from everything I've ever read about it and I really hope a hysterectomy isn't in your near future. I'm sending positive thoughts your way!

Elle · Hermes

OMG you most likely do NOT need a hysterectomy! I'm glad you're not continuing with your current doctor. Endo is extrememly misunderstood and under researched, therefore many doctors are unfamiliar with it and ways to treat it. Your doc sounds a little extremist, and I would find an endo specialist in your area ASAP. Those with the most experience will be best able to deal with what they find when they do surgery.

That said, the only real way to confirm endo is through laproscopic surgery. Some women have no symptoms but have extensive lesions inside, others have severe symptoms and very few lesions. The lesions can be removed, and birth control pills are often prescribed to slow it's regrowth. The endo grows with each menstrual period, so no periods = less endo. The surgery would likely have to be re-done, but insurance will pay for it. Women with endo who undergo laps have extremely high chances of becoming pregnant and carrying the pregnancy to term. The likelihood of becoming and staying pregnant if you do have extensive lesions is low, because many times the lesions prohibits movement of the uterus, not to mention it can grow in and around your fallopian tubes and ovaries therefore inhibiting ovulation and/or increases risk for tubal pregnancy.

HTH! I don't mean to scare you with all this, but because the medical community is still in the early stages of understanding endo, you have to work extra hard to advocate for yourself. I'm PMing you a site I think you'll find helpful ....

Take care

txgal · BCBG

I have been fighting this stuff for over 10 years. I have had 3 laproscopic procedures. I definitely think that you should get a second opinion. Also, you should find someone who specializes in this. Your insurance may consider them a 'specialist' but trust me it is worth it in the long run.

Along with the surgeries, I have done a shot therapy called Lupron. You do it for 6 months and it basically throws your body into menopause. There is add-back therapy so you don't have the hot flashes and headaches like women who are actually in menopause. I felt fantastic while I did this and it the results can last for around a year after you stop them. After that I have just been taking the pill without taking the 'sugar pills'. I usually have a period every 6 months because when I do have one the pain can be kinda bad. Your doc can also prescribe meds to help with the pain.

Feel free to PM me if you have any questions. This stuff sucks, but I've had to learn quite a bit because not only do I have it, but so does my mom and sister. Gotta love genetics.

Edited to add...

Here is a website that may be helpful. This is a list of doctors all around the US that keep up with treatment and stuff on endometriosis. HTH..

http://www.endometriosisassn.org/advisors.html

-- Edited by txgal at 10:25, 2006-04-10

atlgirl · Gucci

ABSOLUTELY get a second opinon. IMO a hysterectomy is the very last resort.

Here's what happened to me - every one is different, but it may help you:

Dec 1998 - I woke up in the middle of the night with terrible, terrible pain. So bad I couldn't sit. DH (my BF at the time) drove me to the ER, where they *thought* that I had a cyst that popped. Gave me demerol and sent me home with Rx for Vicodin and suggested follow up with my primary care dr.

Primary care referred me to a specialist. He suggested it might be Endo, but as someone else mentioned, you can only really confirm it with a laparoscope (sp). Said he thought surgery s/b the last resort and tried continuous b/c for a while. Did that for several months, but still had pain (though never as bad as when I had to go to the ER).

Next step was to try Lupron, but I was afraid of the side effects. So I opted to have the laparoscope surgery. By this time it was Nov 1999 and I was planning my wedding. Happened to mention the surgery to my wedding planner, who said, "Oh, that's no big deal. I've had the surgery three times and have only needed a day to recover". Well...I needed a couple of days, but truly it was one of the easiest surgeries I've ever had. And I have three tiny marks from the laparoscope that you can't even see unless you're looking very closely.

The specialist told DH that I had a lot more endo than he originally thought...and that it might come back within 3-5 years. That was almost 6.5 years ago and I've had no problems since.

So...don't go rushing into a hysterectomy!! Especially if you think you want children at some point. Definitely check around and see about getting another opinion. From a doctor who will not be so "matter of fact" about just removing your uterus!! What an ass. Hang in there and don't let all this frighten you, if you can help it. It does affect everyone differently, but the news may not be as dire as that doc indicated. *hugs*

zeitgeist4 · Gucci

I don't have any advice, but I'm sorry you have this problem. My roommate in college had endo and one time she was in the bathroom all night vomiting from the pain. :(