Medical question for the women here...

[teenster3]

Not to be too nosy but, does anyone else suffer from Endometriosis?
I've been to "specific" websites to talk about it but, I feel comfortable talking to you on here & was just wondering if anyone else here has to deal with it???
I won't get into details now but, was just wondering if anyone else knew what I was going through!

[NoahsMommy]

I'm pretty sure there are a few people here that have it.

I don't, but have heard that heat and birth control pills help a lot.

Hope you feel better soon. I'm sure its no fun...

[trayi52]

Honey, I know exactly what you are going through. It is very painful. I had it so bad, it had gone through the walls of uterus. I got to the point, that I had to just stay in bed, because I was just flooding for the whole month. I finally had a hysterectomy, and that solved my problem. I was never so happy to get that pain out of my life!

What is it that you want to know, hon? I am sure there are others here that have experienced it too.

Willie

[moosmom]

PM Kimmy (Ramanth) I think she's had trouble with it. Correct me if I'm wrong.

[teenster3]

Well......I was wondering what you've taken for it that "has actually helped?!"
My doctor found it when I was 21. She of course DID NOT believe me when I told her something WAS WRONG! But, indeed come to find out it WAS Endo. (she thought it was just gas...go figure)
I have gone through tons of prescription pills....nothing has worked. The ONLY thing that HAS worked for me so far is the drug LUPRON. I know many women have had bad side effects from this drug & in the future (god forbid I do) I might but, so far it's been good to me. The problem is you can only be on it for 6 months at a time & 6 months off. I'm on my 6 months off & in EXCRUTIATING PAIN!!!!!(right now as we speak)
AGH....Sorry to whine about it.....
It's just that I'm kind of in a bind as well because, in the future I would like children & my doctor suggests talking it over with my husband soon. If that were so easy.......he says he's not ready & it'll happen when it happens but, if only he would be more understanding ya know!
I'm now 28, going on 29 in August. I really feel the time clock ticking away & I'm afraid that I will never be able to have children. I've asked my husband WHEN he thinks he'd be ready & he says; when we have money or when he's emotionally ready. But, what about me? It is honestly soooo frustrating!
Besides the monthly pain EVERY month of the Endo. I have the pain of constant wonder when my husband will say: I'm ready!
Sometimes I honestly feel like breaking down & crying!
I know there are others out there probably way worse off then I am. I'm just upset right now.

[trayi52]

It actually sounds like your husband is not taking your illness serious enough and doesn't understand that you are indeed in lots of pain! Sometimes hubbys are very ignorant about endo, I know, my husband was like that for a very long time.

I think you need to educate him and let him know that this is a real illness, and you are in a lot of pain! I just don't know what to tell you about having children though. Does your husband really want children?

It took me a long time to finally be taken seriously about what kind of pain I was going through. Finally was believed when the doctor told my husband that I would need blood transfusions during surgery, which I didn't let them give me anyway. I was checked, and the doctor just thought it was spots of endo. When another doctor finally talked me into having surgery, I found out it was much more than just endo, that it had actually went through the wall of my uterus.

I took pain pills, like lortabs, and even demeral, which did not help the pain! I got to where I would just take about 5 or 6 Ibprofen for the pain. It kind of took the edge off of the pain more than the pain pills.

Do you also have a lot of bleeding? Seems like there are times when the pain is worse. I had my surgery in 1996, so I have been free of that pain for a long time.

I really do feel for you, I know there are others that are probably having the problem right now, it has been a pretty good while for me, thank god!

Willie

[NoahsMommy]

Have you tried these: http://thermacare.com/index.shtml

I get horrible cramps (menstrual and with my crohn's) and these get really, really hot so that I am feeling better with one on (they last 12 hours) and a few Advil. Maybe they can help dull the pain a bit?

I'm sorry you're frustrated and in pain.

[sirrahbed]

Yes, I have endo. Fortunately I was able to have three children and was painfree during the pregnancies. I have had pretty good pain control with continual use birth control pills (skipping the placebo week) thus no period. I am 49 now and wishing for menopause but it is not happening yet. Depo-Provera is another option but I have not tried it. The doctors now recommend a hysterectomy but I am holding off for menopause - the pain is much less than it used to be and I have codeine for the worst of it. Also have migraines that overlap and they hurt worse so I am somewhat distracted. I know it is a miserable problem to have.
Take care.

[teenster3]

Noahsmommy....
Thanks,
Yes, I have tried Thermacare & other heating pads as well. It does help a little but, a lot of times I feel nauseous as well.

sirrahbed...
I have gotten migranes in the past with the Endo. but they just come & go. How frustrating it really is to be women sometimes!
I'm very glad you were able to have children. I hope that I can someday!!!

trayi52....
It sounds like you were in a GREAT DEAL OF PAIN as well!!!
I think my hubby knows that I'm in pain but, he's just not very sympathic. He always tells me: it's mind over matter! But I say: "no, it's in my stomach & the PAIN is real!
I just hate it when no one believes me because they can't SEE it, therefore how can it be there? You know what I mean?!!
No, I can't say that I bleed a lot, thank goodness. The PAIN though is terrible! Gosh, there have been times in the past where I have taken up to 12 advil at 1 time!!! (talk about overdosing myself)
My doctor told me to stop taking it...that my body got used to it & is no longer helping, just hurting me!
I just can't stop.....I just want the pain to go away & I wouldn't wish this on anybody!!!!!!
I did have the lap. surgery in either 97' or 98' but, my current doctor would like me to get it done again! She said a good time to do it would be before we know that we want to get pregnant! I'm ready, just wish hubby was!

[carole]

I know all about pain too, and the fact your husband says that infuriates me, he does not have any idea what he is talking about, he needs to be educated and fast, Endo is a very painful condition , and I really feel for you, try joining a support group where you can talk with other women and get ongoing support that you need and get that hubby along if possible, if only it was all in your mind, then you could fix it.

I am sorry you have to endure this, it is not pleasant, all I can do is send you my hugs and not very adequate advice. Take care.

[trayi52]

Seems like there are some men that just don't get it! That is the way my husband was for awhile, until the bleeding started, then he seen that it was for real.

I think you need to do whatever you can to get rid of the pain, if the doctor says the surgery then if it will stop the pain, sounds like a winner. Maybe the doctor needs to have a talk with your hubby! You could have a baby and then if you wanted to, get rid of the problem for good. I have never been happier than I was after I had my hysterectomy, and I woke up with no pain, and no bleeding!

I do wish your husband would reconsider about having your baby now, if that is what you want. I think he needs to decide before you are not able to have a baby.

Sometimes, it would be nice if a man could just understand all that is involved in being a woman! Whew! If they had to go through that pain. LOL, they say it hurts to get kicked between the legs, I wonder if that is mind over matter? Tell him that is the way you feel too.

Willie

[teenster3]

Carole....
Do you have it as well?
I have searched for a support group in my area....Madison, WI being the closest metropolitan area but, no luck! There is a site I have gone to in Milwaukee but, I don't know of any "immediate" or "actual" support groups where I can actually go & talk to other women with it!
It just seems like WI doesn't keep up with this disease thoroughly. I have been to 5 different doctors in my immediate area in the past 3 years & only 1 doctor actually "listened" & tried to understand the disease!

trayi52...
I am so glad that you are painfree!!!!
Yes, I do wish he knew what it was like...to be kicked between the legs
.......he should know how that feels!
I guess my next step will have to be to get my butt in to the doctor's office & drag him in behind me if that's what it takes!!!!!
For now, I'll just keep up with the ibuprofen I suppose!

Thanks to everyone for listening & talking with me!!!!!

[RICHARD]

Originally posted by trayi52
Seems like there are some men that just don't get it!

Where is the "endo" on a man, anyway????

[ramanth]

You know Richard, there are just some threads you shouldn't crack your "funny" jokes in.

Teenster, like Moosmom said I do have it. Feel free to PM me about anything.

I had very bad abdominal pain right around the time I adopted Kia. It was her nosing that finally had me talking to doctors and he decided to do a laproscopy. Had to have my appendix removed.. and they removed all the endo scar tissue they could find.

At the moment, I'm taking birth control back to back and have emliminated my periods.

Still, every now and then I'll have a bad episode.

I did try Lupron and I didn't like it at all. I had menopause symptoms AND still had very bad Endo pain. Bleah! So I only had the one dose. Even now I still get a rare hot flash. I fear the Lupron really messed me up but I try not to get too worked up.

I just turned 27 and I feel the clock ticking. I'd like to have children, but my boyfriend (who is very supportive) said we can do anything to try and if we can't we can look into adoption.

I don't want to do a hystorectomy until I at least try.

Hugs and support!

[sirrahbed]

Like Ramanth and I have have had pretty good results with the continual birth control pills - is this something you have already tried? It is just regular bcp's only you take them all the time and no "off" week or sugar pill week so no periods. I did have to try several brands to find one that helped the best - mainly because of my migraines.

As for the nausea - that is also something I have a terrible time with - but I have a medicine - Phenergan that works like a charm. It is prescription but maybe worth asking about. It is specifically for nausea. Also, pregnancy is usually a time of pain relief! Then, when you have your family, you can choose whether or not to get the *permanent* fix.

Hope you finsd some relief! So sorry that hubby is not more understanding. It is SUCH a frustrating problem!! I site I used to visit and read for support is http://www.endosisters.com/ You might look around there and there is also a friendly forum similar to PT.