what is the big deal about endometriosis?

Question

I have it and from what i've read on the web, no need to be concerned. so i don't get why they have support groups.

the fact that it "may" affect my fertility is the only thing that might concern me.

oh its mega painful for me....but hopefully after i have my op next year...i will be pain free!

Severe pain….believe I get that. I used to get shots to get through day one of my menstruation and day 2 and 3 in bed out of school on pain killers. I grew up and now I just take a lot of painkillers….which sucks but I deal. Every case is different and some of the complications below do kind of scare me….but they seem to be quite rare. I guess the fact that some people will lose out on having children can be traumatising….I feel sad that I may not procreate….but hey I could have had something else and if I really want a child, physically not being able to do that myself, is not going to stop me. I do however now understand a bit better why people need support groups.

Answer 1

Endometriosis

Endometriosis is one of the most common causes of pelvic pain and infertility in women. If you want to know more about endometriosis see below:



Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body.

Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum.

In addition, it can be found in caecarian-section scars, laparoscopy or laparotomy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum.

In rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain.

The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways.

Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a "frozen pelvis."

It is estimated that 30-40% of women with endometriosis are infertile.

If you or someone you care about has endometriosis, it is important to research the disease as much as possible. Many myths and misconceptions about endometriosis still persist, even in medical literature. For many women, management of this disease may be a long-term process. Therefore, it is important to educate yourself, take the time to find a good doctor, and join a support group.

Answer 2

I had severe endometriosis for over 20 years. The pain was crippling and I would often have a problem with anemia. I missed lots of school and work. Endo affected every area of my life. I had two laporoscopies and one laparotomy (major abdominal surgery), and the damned endo kept coming back. Each time it came back, it spread more.

Finally, in July, I had to have a total abdominal hysterectomy. The endo was so bad that my surgeon said that if I had waited another week or two I would have needed emergency surgery. The endo had begun to eat through my large intestine and was causing internal bleeding. I am only 34. I too was never able to have children. I lost both of my ovaries and went into surgical menopause immediately following the surgery.

Honestly, it was the best thing I've ever done. For the first time in my life I am pain free. Also - I'm no longer exhausted from the anemia caused by severe bleeding. I take a natural, bio-identical HRT that works wonderfully, and now I have absolutely no menopause symptoms.

The best advice I can give anyone with endo is:

1. Find a good GYN. If your GYN doesn't take your pain seriously, find another one. In fact, I once had a FEMALE GYN tell my that severe pain is part of being female. I walked out of her office and never returned.

2. Support, support and more support. This is a debilitating disease that is often misunderstood. It can cause debilitating pain, fatigue, anemia and mood swings.

3. Remember that it's your body. Thus, it is your responsibility to make informed decisions. If you don't feel comfortable about what your doctor is suggesting, get another opinion. Ultimately, you will have to make those decisions ... and live with them.

I wish you all the best .............

Brightest blessings,

LanieBird

Answer 3

Support groups can be very useful as it gives people a chance to share anecdotal stories, self help ideas that doctors may not know of, and to just feel less alone with the condition. I agree, you sound like a lucky one if you don't know what the deal is, but the pain can be severe enough to stop you getting out of bed, cause fainting and vomiting, severe anaemea, tiredness. Pain is not just limited to the pelvis. If the endometriosis has spread to the lung, chest cavities etc, you get pain frome there too, 'cause you bleed into your chest and lungs.
Hope it works out for you and that you are able to have a family if you want one. If not, go and find out the deal with the support groups.

Answer 4

Not sure how old you are, but I have a cautionary tale for you: 10 years ago, after a few tortuous, agonising years, I was finally diagnosed with Endometriosis. Unfortunately for me it was too late - I had my first operation in the March of 1997, losing my right ovary in the process. In the October of the same year, I had to have a total hysterectomy, I was 29 years old. The menopause started the day after surgery, and I have been on HRT ever since.

My two closest friends were having babies to order, and I would never have one - it was/is still devastating, and it felt like my life was over, and has taken me a long time to come to terms with. (although, to be honest I don't think I will ever feel totally happy with what has happened).

I hope that medical advances will mean that your treatment, and the outcome, will be a lot more positive for you than it was for me.

If you are going through what I did, support groups are essential. Just a shame that I didn't get to use one, because it was too late for me.

On that cheery note. I would like to say that I hope your treatment is successful, and you go on to live a happy and fulfilled life. However, please don't forget that there are a lot of women out there who don't know they have the illness, and may not get a diagnosis until the disease is in the advanced stages - support groups for them will be a blessing.

Answer 5

The big deal is that some women have had to live with this their entire lives & it has had a dramatically negative effect on the quality of their lives. Not all women can take pain relievers & their lives must come to a screeching halt every 28 days. They are unable to hold a job due to the hostilities that come from management & employees alike. I am now 53 & menopause has allowed me to be pain free for the first time in my life. I never had a support group, but it would have been nice if I had had someone to relate to regarding this problem. I'm gonna try to find one, now that I know they exist. Any links would be appreciated. Thanks for this question. I learned something of value today!

Answer 6

My wife and I have an autistic daughter, now aged 22 and living at home with us (she always will). Since she was 12 she has had regular bleeding from her nipples when she has a period. We went to a doctor, to a hospital, to a specialist, etc and they all said that bleeding nipples are quite rare, and that this is often a sign of endometriosis - there is actually nothing else that can be cited. However, as she has got older the bleeding has eased, and has now stopped. But support groups are OK, at least they have anecdotal information which can help. However, I am sorry that you have it ... Best wishes, Barry.

Answer 7

There are varying degrees of pain associated with this condition. I was talking to the mother of a 13 year old girl who had it so bad she had to take morphine during her periods. They were considering a complete hysterectomy as the only long term treatment. This of course means that this 13 year old will never bear children, and will affect her chances of getting married. This is a huge deal. You are very lucky that it sounds like you have a mild case.

Answer 8

Once infertility has been diagnosed, there are a number of treatment options available depending on the root cause of the problem. Learn here https://tr.im/ETBL2

Infertility is a condition defined as not being able to become pregnant after at least one year of unprotected, regular, well-timed intercourse. Women who suffer from multiple miscarriages may also be diagnosed as infertile. Infertility may be classified into two groups, primary and secondary infertility.

Answer 9

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Answer 10

I had a partial hysterectomy at 28, because my (US) gynaecologist gave up trying non-surgical ways of treating my endo.

I used to hoard pain-pills, for when I was on my cycle, because the pain was so unbelievable. I missed 3 days of school a month, because I couldn't uncurl.

I had to have my left ovary removed, a decade later, because the adhesions and scar tissue had attached it to my lower intestine in a way that made going to the toilet excruciating.

When a woman has her period, the endometrium (uterine lining), which has filled up with blood, sloughs out of her uterus.

But if she has endometriosis, there are endometrial cells all over the inside of her abdomen. They bleed. Every month. Free blood in the abdomen is very, very painful. The body has to re-absorb it, but it is waste-blood. Re-absorbing waste materials is not something we are meant to do. Waste is supposed to exit the body, not hang around being dead, inside our bellies.

'What's the big deal?' Before my hysterectomy, I bled for four solid months. I was on laudanum (dilaudid-USA), and trying to work.

I wanted children, but two solid years of hormones, D&Cs, stronger and stronger pain medication, and longer stretches of days spent curled up in a foetal position on the bathroom floor, finally convinced my doc to do an exploratory. She said, 'I'm ready to give up. Are you?'

I said, 'Of course I am. It's not as though I could carry a child to term, anyway. I'm not going to use it. All it does is make me miserable. Take the damn thing out!'

I never had any children -- though I had a LOT of miscarriages. That hysterectomy was the best thing I ever did, for my quality of life.

Nah, no 'big deal.' 17 years of agony and miscarriages, followed by sterility, before I was 30. The doctor told me my uterus was so scarred and deformed, that I could not possibly have carried a child past 8 weeks.

Forgive me. It was a long time ago, and I am very glad I had the surgery, but this question of yours has made me feel really bitter and cheated. It hurt so much, for 17 years. I'm limping along on one menopausal ovary, now. But I always wanted to have a baby (that wasn't my fxthxr's), and raise a happy child. I was never a child. I was robbed of being a parent, too. And I will b!tch-slap anyone who says the word 'adoption'.

~which is it?~

liberation's cost
entwines inextricably
vine-thickly, with loss.

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