Endometriosis

Endometriosis

Badass Badass
Do you have, or have you even heard of this disorder?

How have you been able to handle the pain?
Over the counters don't work for me, weed doesn't work for me, darvasets they gave me don't even help! Any advice is greatly appreciated!
Answers (public voting - your screen name will appear in the results):
I have heard of this
padmeamidala , Ciao. , Azule , Hallmar82 , Nora , bayosgirl , Khanner , MissCandyland , Stinkytofu10 , Graniteal , Kitka , ghalik , mistressg , RTC , Peaches2000 , Lady Bear
16
I too have this
hot n spicey , P'Gell , indiglo , Nora , RTC
5
Sorry, I don't know what you're talking about
hillys , SubmissiveFeminist
2
I too haven't found ANYTHING that helps the pain
Hallmar82 , Graniteal , RTC
3
I have found something that helps... PLEASE FOR THE LOVE OF ALL THAT IS WOMAN TELL ME!
P'Gell , indiglo , js250 , RTC
4
I'm male
Hallmar82
1
Menopause...
If you have this you are forced to take 1-2 days off work each month
P'Gell , Azule
2
If you have this you are forced to take more than 1-2 days off work each month
js250
1
My case is so severe I cannot work.
js250
1
Other?
js250 , Nora , mistressg
3
Total votes: 38 (22 voters)
Poll is closed
03/26/2012
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hot n spicey hot n spicey
I am sorry to say that I no longer have this because I had to have a hysterectomy 2years ago. I was in constant pain and my periods were close to three weeks long. I had the surgery three days after I found out I had it thats how bad mine was.
03/26/2012
Ciao. Ciao.
I have heard about this. Tristan Taormino, whose done a lot of great queer-sex related stuff went through this recently and shared her story here.
03/26/2012
P'Gell P'Gell
Quote:
Originally posted by Badass
Do you have, or have you even heard of this disorder?

How have you been able to handle the pain?
Over the counters don't work for me, weed doesn't work for me, darvasets they gave me don't even help! Any advice is greatly appreciated!
The pain from my endo was somewhat controlled by Vicodin or Vicodin and Aleve together. However, most doctors don't want to treat you with this. (Plus, Darvocet has been taken off the market, even though it never helped me much.)

I had to have laproscopic surgery, then a year and a half of Depo Provera to stop my periods, then I had an other pregnancy. I still have pain (years later) but I can control it with Aleve. I have months where I have to take a day or two off.

I had to have a surgical solution. Mine was too severe to live with otherwise.
03/26/2012
indiglo indiglo
I have been able to manage my symptoms by taking continuous hormones. It has helped significantly. I remember very clearly, however, popping lortab after lortab in the beginning - and they never even touched the pain. I feel your pain, and I'm sorry you're suffering so much. If my hormones didn't help me, I'd still have to take a week or 2 out of my life every month just to remain curled up in the fetal position trying not to vomit.
03/26/2012
js250 js250
Badass, I am so sorry this is happening to you!! I will never forget the years of agony that I went through. Please message me!!!!! I ended up having a full hysterectomy, including fallopian tubes, ovary and cervix 20 years ago when I was 22 due to the severity of my case. I had endometrial ropes, NOT fibroids that grew to my bowels, kidneys, intestines, diaphragn and other internal areas. Luckily for me I opted for the surgery since they discovered the ovarian cancer tumors at the lab afterwards.

How is your physician treating you now? What, if any, hormones and drugs are you taking? What are your pain triggers? How long and severe are your periods? Have you noticed anything that gives you a minute bit of relief?

Sorry to ask you 20 questions, but this helps immensely in letting you know what worked for me and what stage I was in at the time. I might be able to help, or at least I will take a stab at it. These are simple things I came up with on my own from reading, talking to some older ladies that went through it and by trial and error. Nothing medical or illegal, I promise!!LOL!!

PLEASE message me back!!
03/26/2012
Hallmar82 Hallmar82
My wife has endo too. Right now, it's only occasional pain that comes and goes. Her ob-gyn also recommended a hysterectomy after we're done having kids - shortly after she turns 30.
03/26/2012
Nora Nora
When I had a myomectomy (fibroid removal surgery) last October, they also found some Endometriosis as well. In my case, since they were already there removing the fibroid, they also removed the Endometriosis that they could easily see.

After recovering from the surgery, my cramps were MUCH less and the bleeding was less as well.
03/26/2012
bayosgirl bayosgirl
I suspect that I have it because I have cramps that are excruciating. I also have chronic, unexplained fatigue which is another symptom of endometriosis. However, my GP won't test for it. I need to find a good gynecologist and find out once and for all if I have it or not.
03/26/2012
hot n spicey hot n spicey
Quote:
Originally posted by bayosgirl
I suspect that I have it because I have cramps that are excruciating. I also have chronic, unexplained fatigue which is another symptom of endometriosis. However, my GP won't test for it. I need to find a good gynecologist and find out once and ...
Another sign is how long your periods last. Or if you have more than one a month. I will say a lot of the reason mine was so bad was because I had eight children. Two years after my youngest I had an ablation which in my case made things worse. Less then a year later I had the partial hysterectomy which means they left my overies and tubes. It can get bad enough that blood transfusions would be needed. You should really find a better OB/GYN. In my case I found that an older doctor was best. Because of my original doctors inexperience I was treated the wrong way and stayed in pain longer than I should have. I wish you luck and if you have any questions plese feel free to message me.
03/27/2012
Khanner Khanner
I have heard that therapy can help with pain management. Not much of a suggestion, but I haven't seen it mentioned yet.
Hope you find a solution soon, I hear endo's no fun.
03/27/2012
P'Gell P'Gell
I'm sorry you are suffering. Looking for a doctor who knows endo and will treat it well is important. I had to change doctors after my laproscopic surgery, because although the pain was better, it was still somewhat there. My doctor seemed to think that ONLY a hysterectomy was the cure. I'm sorry, but I wasn't willing to give up my uterus so quickly and so young. He said, "Well, you're done having kids, aren't you?" and I said, "Maybe, but I don't want to close that door. You're done having kids, would you have your testes removed if you had a problem, or would you look for an alternative?" When he said, "Well that's different." I quit seeing him and went back to my old OBGYN who treated the pain properly. Soon I was pregnant again, (which of course would never have happened if I had let the other dude remove my organs) and had a beautiful baby girl. (Despite the fact that the other doctor said I "couldn't get pregnant ever again" after the procedure, because the damage was too bad.) After her birth, the pain was much better, I didn't have a period for more than a year after she was born (which is common with complete breastfeeding) and even though I still have some pain, it's much better.

I do think the laproscopic surgery helped, (as did the pregnancy and the additional year "Break" from cyclical bleeding while the first year of nursing was happening) but I had to basically beg for the more difficult laproscopic surgery. It's easier for doctors to take everything out than to do micorsurgery though three tiny holes in your abdomen. I went with what was harder for my doctor, but better and healthier for my body, mind, spirit and well being.

I hope you find a good doctor and a solution soon.
03/27/2012
P'Gell P'Gell
Quote:
Originally posted by Khanner
I have heard that therapy can help with pain management. Not much of a suggestion, but I haven't seen it mentioned yet.
Hope you find a solution soon, I hear endo's no fun.
What kind of therapy are you talking about? Drug therapy can help, as can hormone therapy. Other kinds of "therapy" (meaning psychotherapy or physical therapy) are not recommended for endometriosis.
03/27/2012
MissCandyland MissCandyland
Hope you find a good solution too!
03/27/2012
Khanner Khanner
Quote:
Originally posted by P'Gell
What kind of therapy are you talking about? Drug therapy can help, as can hormone therapy. Other kinds of "therapy" (meaning psychotherapy or physical therapy) are not recommended for endometriosis.
I meant psychotherapy.
It seems I'm not misremembering because I found some articles supporting psychotherapy as pain management, but they're not specifically for endometriosis. I also can't find the Kerns study they reference for free online.
03/27/2012
Stinkytofu10 Stinkytofu10
Quote:
Originally posted by Badass
Do you have, or have you even heard of this disorder?

How have you been able to handle the pain?
Over the counters don't work for me, weed doesn't work for me, darvasets they gave me don't even help! Any advice is greatly appreciated!
Luckily I don't have this.
03/29/2012
Kitka Kitka
I actually just recently met a lady with this condition at a play party. She was in constant pain and had to take a bunch of pain pills to help dull it while there. I don't really have any other experience with it other than that so there really isn't much else for me to add here.
03/29/2012
mistressg mistressg
I have heard about it, and it has been suggested to me by health care providers that I may have it, but no tests were done or anything so it was really just a suggestion.
03/31/2012
dragonn dragonn
Quote:
Originally posted by Badass
Do you have, or have you even heard of this disorder?

How have you been able to handle the pain?
Over the counters don't work for me, weed doesn't work for me, darvasets they gave me don't even help! Any advice is greatly appreciated!
Never heard of it.
03/31/2012
P'Gell P'Gell
Quote:
Originally posted by Khanner
I meant psychotherapy.
It seems I'm not misremembering because I found some articles supporting psychotherapy as pain management, but they're not specifically for endometriosis. I also can't find the Kerns study they reference for free ...
Sorry, I don't believe in psychotherapy as a pain solution. It is great for other things, but pain is physical. It also pegs women with endo as "complaining housewives." Come to think of it, migraines used to be called "The Frustrated Housewife Disease." "All she needs is to better enjoy her role as Wife and some therapy and Valium." All ridiculous.

Pain is physical, is needs physical solutions. Medical, surgical etc.

I've suffered from several different pain conditions in my life, migraines, endo and fibromyalgia. NONE of them are fixable by psychotherapy. Perhaps the depression that pain causes can be, but if the pain were TREATED there would be no need for that.

Your link only had ONE peer reviewed article cited. It talked about low back pain, not endometriosis. Also, the site was one which advocates psychotherapy for virtually everything. Psychotherapy is good for many things, but I don't like pain issues, especially those that effect women particularity to be associated with "It's all in her head."

We dealt with that from Freud until the early 1990s. Pain requires stronger guns than just "Talk therapy."
04/13/2012
P'Gell P'Gell
Quote:
Originally posted by Hallmar82
My wife has endo too. Right now, it's only occasional pain that comes and goes. Her ob-gyn also recommended a hysterectomy after we're done having kids - shortly after she turns 30.
The GYN I was seeing at the time recommended I have a hysto, "because you are done having kids." I refused, not wanting to close any doors. It's easier for them to do a complete hysto than it is to carefully remove the endometrial implants one at a time. I kindly refused a hysto and asked him to do the harder work for him, but body saving work for ME of removing the implants ONLY.

I got pregnant with my youngest child about 2 years after my endo surgery. If I had consented to a Hysto, I would never have known her. All but the most severe endometriosis can be treated with implant removal surgery. It's work for the doctor, but that's his job.
04/13/2012
RTC RTC
I answered yes and no for finding something that helps. It's very hit or miss for me, as some months taking Aleve will help for 2 or 3 hours and other times it does nothing.
At one point smoking weed and lying on a heating pad helped a lot, though I must mention that my cramps aren't as severe as some (and got a lot better when I was taking birth control, but have progressively gotten worse since I stopped)
04/13/2012
Lady Bear Lady Bear
My sister has it but I'm not sure what she does for it. I'm sorry you are having this problem.
04/19/2012
Total posts: 23
Unique posters: 17