Printable View
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!:(
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... :(
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:)
PM Kimmy (Ramanth) I think she's had trouble with it. Correct me if I'm wrong.
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.
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:)
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. :(
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.
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!
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.
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:)
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
:D .......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!!!!!:)
Quote:
Originally posted by trayi52
Seems like there are some men that just don't get it!
Where is the "endo" on a man, anyway????:confused:
You know Richard, there are just some threads you shouldn't crack your "funny" jokes in. :rolleyes:
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.. :eek: 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!
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.
Quote:
Originally posted by ramanth
You know Richard, there are just some threads you shouldn't crack your "funny" jokes in. :rolleyes:
Just as I suspected.....I don't get it.
I didn't have that but I have had problems. There's a woman at work that has it. I know it causes a lot of pain. I don't really know too much about it, though.
And you'd better consider yourself :mad: lucky you don't!. Things like this are sure as :mad: nothing to joke about. If you only knew what all a lot of us have been through.Quote:
Originally posted by RICHARD
Just as I suspected.....I don't get it.
Teenster No I don't have it , not that I know of, but I sure have a lot of pain and have done for years, I am now on Provera which has helped some, but lately it has not been so good, but I am nearing that menopausal age, so anything can happen from now until then, I also take vioxx for pain relief, both are only by prescription here in NZ, vioxx is also used as effective pain relief for arthritis, so for me I kill two birds with one stone, but unfortunately neither seem to get rid of the pain completely, but they do help some. I have the chronic illness Fibromyalgia, which could account for my increased pain at this time,more than likely, so pain is nothing new to me, I live with it daily, and you have my empathy, very much so.
They do have side effects, like all medication,but nothing too major, but I am finding the vioxx less tolerable as time goes on, maybe our bodies just become used to it, and now a stronger drug is required.
I have lots of empathy for you, as even though I have no official diagnosis, the pain I experienced before my medication was unbearable, now its still not great, and I cannot wait until menopause, except for the other problems associated with it, I say bring it on!!!sooner the better.
I am lucky I have a very supportive husband.
And To Richard I think this is a thread you should have stayed well away from, it suprises me you would even want to read all this stuff.
I KNOW, look what I created!.....Richard, sorry man but' you haven't got a clue on this subject!!!!
I just wanted to know if there were others out there like me!
I drove to work today (about 35 minutes away) in the worst pain ever. I've had the pain before but after taking several doses of the Lupron I thought that it would get better, not worse! It was great when I was on it but, my mom worries about the side effects that I will have later on in my lifetime.
I know this sounds extreme but, sometimes I just feel like ripping out my stomach.....that WHOLE area where it hurts, it really sucks!!!!!!
I took 8 advil this morning & 2 prescription pills (a strong dose of ibuprofen) when I got home this evening & STILL NO RELIEF!
I don't know that the bcp's work for me. I've been given several & it does stop the bleeding but, for me it's the pain that I worry about!<<nothing & I mean nothing seems to be working. I'm so depressed tonight!
I don't why, back years ago when the doctor discovered I had it, he gave me what a woman takes for menopause, Premarin and Provera, at least I think it was Provera, it seem to make my pain worse!
I fought hard not to have a hysterectomy, but after it got worse, and I was bleeding non-stop, I was happy to finally have it. I had to stay at home all the time, because of so much pain and my clothes were messed up. I felt like I was in hard labor all the time!
I really feel for you, or any of you that are suffering with it. My heart just goes out to you, it really does.
I hope you find something to relieve your pain. Tina, I just don't see how you or any of you can go into work with that kind of pain!
Willie
Teenster *HUGS*
It is NO fun being in pain. Not at all. :( :(
Lately I find if I'm stressed out or "hold it" (going to the bathroom) for too long I'll have a very bad spasm. But the back to back bcp have worked as a temp solution. I'm hoping that by getting pregnant it'll eliminate the pain, but I know that might not be the case.
My mom has endo and never knew she had it until I was born via C-section. She just had painful periods and figured that was normal. The doctor was surprised that she was even able to get pregnant when they saw all that endo tissue. She had two more kids and then had a hysterectomy.
Carole, you may have Endometriosis. Many people have it and never know it. They may just have pain during periods. I have pain all the time.
These are the stages of Endometriosis that I was told about. I'm about a Stage III.
Stage I, or minimal endometriosis, involves small spots of endometriosis in the pelvis or the ovaries without scarring. There is little evidence that it causes infertility and there is no evidence that surgery is a cost effective treatment. The value of a laparoscopy to diagnose stage I endometriosis is debatable. Many patients conceive without treatment.
Stage II, or mild endometriosis, involves more extensive areas of endometriosis, often with "nodules" in the cul-de-sac on exam. The ovaries can be scarred to the sides of the pelvis making the ovaries immobile. A careful exam and vaginal ultrasound will usually make the diagnosis without surgery. Again, many patients conceive without surgical treatment but surgery can be helpful.
Stage III, or moderate endometriosis, has more scarring and/or endometriomas (collections of endometriosis in the ovaries). Vaginal ultrasound done in the first half of the cycle will detect endometriomas. The presence of an endometrioma is diagnostic for stage III or IV endometriosis. Surgical treatment is indicated.
Stage IV, or severe endometriosis, is like stage III but with either endometriomas in both ovaries, involvement of bowel and/or bladder or very extensive scarring. Surgery is needed for general health reasons. Often IVF will eventually be needed to achieve fertility to bypass the scarring.
Oh and Sirrahbed, thanks for that link. :)
I often go here when I'm having a bad episode. They are very nice. :)
http://boards.webmd.com/topic.asp?topic_id=29
ramanth, when I had it, they called what I had a different metioses, the kind that is inside the walls of the uterus. You don't happen to know what the name of that would be, would you?
They told me, but I can't remember for the life of me what it was now. My memory is so bad!
Willie
As far as I know (or can remember it being explained to me) is that Endometriosis is the condition/illness where the endometrium that lines the uterus sheds not only inside the uterus but also outside of the uterus. Since the blood has no where to go, it causes the lesions and scar tissue that in turn causes the pain.
Never heard the term metioses, but that doesn't mean it can't happen! :)
As long as you stay away from the Bobbitt/getting your thing stuck in your zipper stuff....Quote:
Originally posted by carole
And To Richard I think this is a thread you should have stayed well away from, it suprises me you would even want to read all this stuff.
I didn't know that there is a "secret woman's malaise" club....no men allowed.
In my experience, the more I learn about "women's stuff", It helps me be a little more sympathetic to what you all go thru.
Spending all the years working in a hospital, with mostly women doesn't help my curiosity...
Asymptomatically yours....
;)
Richard, I have no problems with you asking what Endometriosis is, but since the first post from you was:
and not "What is Endometriosis?", I hope you can understand why I got a bit annoyed.Quote:
Where is the "endo" on a man, anyway????
Men CAN get Endometriosis, but normally it's in the arms/shoulders as far as I can recall and is very rare.
Google 'Endometriosis'. :)
Oops, I misspelled it! I meant to spell it as metriosis! Boy do I feel dumb!
Willie
Well here is the WebMD definition:
Endometriosis is a disease in which cells that look and act like the cells that line the uterus (endometrial cells) are found in other locations in the body, usually in the pelvis. These cells can attach to the ovaries or fallopian tubes; the outer surface of the uterus, the bowels, or other abdominal organs; or, rarely, to other organs and structures in the body. The places where the cells attach are called implants, or lesions.
Endometrial cells that are found outside the uterus respond to hormones released during the menstrual cycle in the same way as endometrial cells that are located in the uterus.1 At the beginning of the normal menstrual cycle, when the lining of the uterus is shed and menstrual bleeding begins, the sites of these abnormally located cells (implants) may swell and bleed.
The body responds to the swelling and bleeding by surrounding the cells with scar tissue. During the menstrual cycle, this scar tissue may become red, swollen, and painful. As the scar tissue increases, it can form adhesions that cover and bind the abdominal organs. Adhesions can interfere with an organ's normal function.
http://my.webmd.com/hw/endometriosis...000_1077_00_07
Maybe back when you were diagnosed they called the cells 'metriosis'? :)
if you go back and read why I responded you'll see that it was a little play on the "Men don't get it " line.....
Of course we don't get it...we are men, we don't do well understanding women...especially when we are castigated (I want to say casturated, but you wouldn't understand-touche') for wanting information.
Actually, I didn't ask WHAT endometeriosis is-
it's mysterious enough as it is.
I'll pass on the google offer....
When you see hysterectomies, D&Cs and other women operations everyday for 10+ years, you feel sympathy and wonder what it's like to have a procedure like that done.....
Well, those feelings just aren't manly....
It was something with the metriosis on the end of the word. Darn, I wish I could think of what it was called. That doctor said one of my ovaries looked like it had exploded, and the uterus was like mush! Anyway, I was so happy to get my plumbing took out!! I was so tired of the pain, and always having to wear a pad. I could wear, tampons, it made me hurt worse. Can you wear tampons, ramanth? Or do they make you hurt worse too?
It is sad the things we women have to go through, as soon as I did have the hystrectomy, it threw me right into menopause. I was taking hormone pills, but now I have changed to the shots again.
Back then, I always have a really hard time remembering what year I had my hysterectomy, I know it was right before my granddaughter was born, and she was born in 96, and it was a day after my birthday(great birthday present!) So it was December 29, 1995! Wow, I didn't realize it had been that long ago!
I had the easy kind of surgery, it was amazing! I didn't even realize I had the surgery. They took everything out vaginally, and that was so easy. No pain from the surgery except one little pain from the gas they pumped me full of! Now that is the way to have surgery. No pain! I felt so much better too.
Richard, I know you are just trying to find out more about this kind of thing, to me it just shows that you are very sympathtic to us women.
Willie:)
My sympathy to everyone who suffers this sort of pain - it must be dreadful. I have a friend who suffers from it and have seen at first hand how bad it can be.
My heart just goes to you - and I consider myself to have been so lucky.
Lynne
Richard.....
I'm not trying to bash you for not knowing or whatever. I wish my own husband wanted to know more about it & be more helpful instead of always thinking it's in my head!!!!!:mad:
I'm just surprised to see a guy responding to this thread that's all!!!!:p
I'm sure guys have problems just as well.....
I'm still trying to get over the fact that my dad has prostate cancer!
OW!!!! :eek: :(Quote:
Originally posted by trayi52
It was something with the metriosis on the end of the word. Darn, I wish I could think of what it was called. That doctor said one of my ovaries looked like it had exploded, and the uterus was like mush!
I used to wear tampons back in high school and college and it didn't really hurt while I was wearing them, but when I took them out, it felt like it was either sucking my insides out or felt like I was pulling something covered with sandpaper out. After I was diagnosed with Endo the doc said not to wear tampons anymore.Quote:
Anyway, I was so happy to get my plumbing took out!! I was so tired of the pain, and always having to wear a pad. I could wear, tampons, it made me hurt worse. Can you wear tampons, ramanth? Or do they make you hurt worse too?
So I wear a pad when I "flush out" my system every four or five months. :)
Firstly Richard I don't think anyone minds that you wish to read all about us women and our very personal problems, after all it is a public forum, I think it was the tongue in cheek humour that just was not appreciated this time around, there is a time and place for everything, this was not it.,having said that consider your hand smacked, and I wanted to say I have always found you to be a great guy, with a very sympathetic attitude to us women, and working in a hospital you will have seen plenty, you just have to tread carefully in some of these threads with us women ok mate.!!!! I for one want to concentrate on the subject in hand and help Teenster if we can.
Teenster I wish there was something I could say or do to help you out with your depression, I know exactly how you feel, my life is very much affected by similar problems, and restricted by it as well,I have been oh so tempted to go under the knife, especially as my mother had a hysterectomy recently and it was a breeze, but you are young and wanting a family.
No doubt you have been to a specialist? is there nothing they can do, its a vicious cycle, being in constant pain, causes depression, and so on, its all part of the illness.
I cannot stress this enough Teenster you must get your hubby educated, you need his support and understanding and empathy and TLC at this , please persuade him to go to a support group or something with you,he is not helping your situation at all with his lack of understanding and care.
I Find support groups are wonderful for a short time, after a while they to me become a little depressing, but it is good to be amongst people who acknowledge your suffering and can offer advice , help and understanding.
Some of us women have been handed a very bad deal, but we just have to get on with it,and at times it is very difficult, Teenster I can only offer you my sincere empathy, HUGS , and advice, and wish for your pain to ease soon , and that you can find something that actually helps, good luck my dear.:)
Carole...
Thank you for your kind words. Yes, I just found a good "specialist" female doctor that I like last year. She is the one that has been trying to help me the most out of all the doctors that I have seen in the past.
I hope no one here thinks that I'm trying to feel sorry for myself. I do know that other people suffer from far worse things than what I have. I just wanted to know if there are women on this site that have problems as well.
My friend recently told me about the morning-after pill & how it is supposed to help with the "pain". I'm not sure about that drug though.
I JUST WANT THE PAIN EVERY MONTH TO STOP!!!!!
I know there are just so many words a person can say & offer advice for. I'm just venting & confused....I wish there was that special wand to wave around & take everyone's pain away!
The pain is getting worse & I will have to call my doctor again. I'm just scared & wondering what I should do this time!
When I was diagnosed back in 97' or 98' the doctor told me I was a STAGE I.....but that it doesn't necessarily mean that the symptoms are any less than a higher stage.
After my laproscopic surgery, I'd say I was ok for a few years then it started gradually coming back again.
You know you just have those days when you are soooo depressed. You just either had a bad day at work or something went wrong at home, whatever the case may be....you feel alone sometimes.
I just feel down right now, I'll feel better soon I'm sure! And to those of you who wrote me.......THANK YOU for sharing your stories.....you are angels!!!!!!!!!!!:)
NEVER and I mean NEVER feel you are just feeling sorry for yourself, it does not matter that other's may have it worse, there is always someone worse off than yourself, your pain is real, and you are hurting right now both physical and emotional, and that is what your friends on PT are for to listen, offer advice, comfort, give you a laugh sometimes, even a chewing out, we all have diversity in our lives one way or another be it, physical, mental, or whatever.
You are having a real tough time right now, and a lot of us can empathise having shared your distress, be it as bad or not, we all offer you only what we can from the heart.
TAKE CARE of yourself, would having a spa help at all? just a thought, anyone close by with one or a facility nearby., just relaxing in the warm water or even the jets might help ease some of your pain.
Support info possibly in your area
http://groups.google.com/groups?oi=d....endometriosis
http://www.unitedwaymc.org/firstcall/iris/910nb6no.htm