Posted on 07/10/2010 9:45:00 AM PDT by kimmie7
I was just wondering if anyone else is dealing with endometriosis and/or pcos. I've been looking for support groups elsewhere, but most seem to be (excusing the expression) dying out in popularity.
I'm not a new sufferer, but am newly diagnosed wih stage IV endo...and would love to connect with others fighting the same fight. For those others to be FReepers would be even better!
My DIL was diagnosed with this. She ended up having to get a hysterectomy.
My ob/gyn wants me to take Lupron, but hubby and I don’t like what we’ve heard about it. The only option after that is a hyster.
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Don't worry Kimmie. Happens to my brain too.
Can I pray for you kimmie? I’ll keep it up til you have the symptoms resolved via TAO-BSO. Lupon will make you angry, painful and male. Stay away from it. God Bless You Kimmie
lol, thanks!
So sorry to hear you are suffering with is problem. It’s not easy and none of the medical solutions are happy ones. I just prayed for you asking for Jesus to take over the case. He’s the best doctor I ever had.
i have endo, as does my daughter.
do *****not***** take lupron.
freepmail coming.
What is TAO-BSO please?
I know about the Lupron...and I already have too much testosterone from the pcos, don’t need more!
I recommend a laparoscopy and laser removal of the endometriosis over any drugs.
I have a friend with endo who had a baby, and then she told me she got so much better.
I have pcos, and wasn’t diagnosed till I was in my 50’s. When I see how it has reached into all the areas of my life, and damaged me, it makes me angry I didn’t find out about it sooner.
I walked into the office of a diabetes specialist, and as she walked in the door she said, I would bet anything you have pcos. I had never heard of it before.
But all these years when I been struggling like a maniac with my weight, hair growth, hair loss, menstral pain, skin rashes, etc..... It would have been nice to know it was freaking HORMONAL!!! (appropriate raise in voice here!!!)
I’ve always wondered why my triglycerides were through the roof, no matter what I ate.
You shouldn’t get flamed. In fact, I sympathise with your fight. Good luck and I hope you get some support.
Here is a Wiki entry for readers to explain a layman view of the disease:
Symptoms
Pelvic pain
A major symptom of endometriosis is recurring pelvic pain. The pain can be mild to severe cramping that occurs on both sides of the pelvis, to the lower back and rectal area and even down the legs. The amount of pain a woman feels is not necessarily related to the extent or stage (1 through 4) of endometriosis. Some women will have little or no pain despite having extensive endometriosis affecting large areas or having endometriosis with scarring. On the other hand, women may have severe pain even though they have only a few small areas of endometriosis. However, pain does typically worsen with severity. Symptoms of endometriosic-related pain may include [3]:
dysmenorrhea – painful, sometimes disabling cramps during menses; pain may get worse over time (progressive pain), also lower back pains linked to the pelvis
chronic pelvic pain – typically accompanied by lower back pain or abdominal pain
dyspareunia – painful sex
dysuria – urinary urgency, frequency, and sometimes painful voiding
[edit] Infertility
Many women with infertility have endometriosis. As endometriosis can lead to anatomical distorsions and adhesions (the fibrous bands that form between tissues and organs following recovery from an injury), the causality may be easy to understand; however, the link between infertility and endometriosis remains enigmatic when the extent of endometriosis is limited.[4] It has been suggested that endometriotic lesions release factors which are detrimental to gametes or embryos, or, alternatively, endometriosis may more likely develop in women who fail to conceive for other reasons and thus be a secondary phenomenon; for this reason it is preferable to speak of endometriosis-associated infertility[5] in such cases.
[edit] Other
Other symptoms may be present, including:
nausea, vomiting, fainting, dizzy spells, vertigo[citation needed]
frequent or constant menstrual flow[citation needed]
chronic fatigue[citation needed]
heavy or long uncontrollable menstrual periods with small or large blood clots
some women may also suffer mood swings[citation needed]
extreme pain in legs and thighs
back pain
mild to extreme pain during intercourse
extreme pain from frequent[citation needed] ovarian cysts
pain from adhesions which may bind an ovary to the side of the pelvic wall, or they may extend between the bladder and the bowel,uterus, etc.
extreme pain with or without the presence of menses
premenstrual spotting
mild to severe fever
headaches
depression
hypoglycemia (low blood sugar)
anxiety
In addition, women who are diagnosed with endometriosis may have gastrointestinal symptoms that mimic irritable bowel syndrome
Patients who rupture an endometriotic cyst may present with an acute abdomen as a medical emergency.
Occasionally pain may also occur in other regions. Cysts can occur in the bladder (although rare) and cause pain and even bleeding during urination. Endometriosis can invade the intestine[citation needed] and cause painful bowel movements or diarrhea.
In addition to pain during menstruation, the pain of endometriosis can occur at other times of the month and doesn’t have to be just on the date on menses. There can be pain with ovulation, pain associated with adhesions, pain caused by inflammation in the pelvic cavity, pain during bowel movements and urination, during general bodily movement i.e. exercise, pain from standing or walking, and pain with intercourse. But the most desperate pain is usually with menstruation and many women dread having their periods. Also the pain can start a week before menses, during and even a week after menses, or it can be constant. There is no known cure for endometriosis.
Just had my lap two weeks ago, they did a D&C, cauterization, laser removal, took off a 1.5” cyst on the right ovary, resected a large adhesion and removed my left fallopian tube. It didn’t look like a tube at all, just a mass of scarring.
Doc wants to do the lupron in 4 weeks, but hubby and I are probably going to insist on the hyster. I’m pretty much infertile now anyway, and we have a wonderful son.
I don’t know about any drugs. Your age and desire for children would determine the other.
I can relate, dear, between pcos and endo my body is a wreck.
My doc diagnosed pcos on sight, I have the telltale dark “duck ring” on my neck. I’d been scrubbing the crap outta my neck for years thinking it was just dirtier there for some reason, lol.
I’m type 2 diabetic along with so I take Metformin (2000mg/day) for both that and the pcos.
Believe it or not a succesful pregnancy usually clears it up. My first wife had endo and after our son was born she had no more trouble with it. It’s kind of drastic I know, but...
Mine was better for about 2 years after son was born. Then it hit worse than ever.
Plus I’ve been pretty much rendered infertile from the endo and pcos. I’d have had at least 3 or 4 but it was not to be.
I took Lupron and it didn’t affect me much, except for no cycles. But then I had to have a hysterectomy, whew, that’s helped a LOT.
I’m thinking that instead of doing the temp (and very expensive) fix, I’ll just move on the the hyster. My insurance is paying 100% now, so why not just get it done by the end of the year for free?! (my thinking, anyway)
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