share: Pains and Trials of Endometriosis

Hi Nubianqueen

Thanks so much for your question and welcome to Empwowher!

My first thought when I read your post was that how great that you have three kids, since endometriosis can make it very difficult to conceive. I suppose there are some blessings amidst all that pain.

I'm sorry you're dealing with so much pain. Your kind of pain and the heavy bleeding you experience are typical for someone with endometriosis.

Are you finished having children or would you like more? Your answer may affect your options.

We have quite a detailed Endometrosis page and among the topics covered are :

The goals of treatment:

◦Control pain
◦Slow endometrial growth
◦Restore or preserve fertility

Treatment options depend on:

◦Severity of symptoms
◦Size, number, and location of growths
◦Degree of scarring
◦Extent of the disease
◦Age and whether you want to have a baby

Treatment includes:

Pain Medication
Your doctor may recommend:

◦Over-the-counter pain relievers to ease mild symptoms
◦Prescription pain relievers (often needed)
◦Nonsteroidal anti-inflammatory drugs to reduce inflammation and help with cramping (best when taken on a regular basis)

Hormonal Therapy
Hormones are an option for women who are not trying to become pregnant. Birth control pills and other injectable drugs interfere with estrogen production. These medications may decrease pain and shrink the size and number of endometrial growths.

But endometrial growth tends to come back when the hormones are stopped. A common way to take birth control pills is continuously, so that you no longer menstruate.

Surgery
If you have severe symptoms or you want to get pregnant, doctors can try to remove endometrial growths. This is often done with laparoscopic surgery. In severe cases, it may be advised to also remove the uterus and ovaries. But this means that you cannot get pregnant.

You can read more here : http://www.empowher.com/condition/endometriosis

You would certainly have to think very long and hard about any kind of hysterectomy. That is something that should be an absolute last resort, and should not be taken lightly.

Since your doctor is wrong and your symptoms have not eased at all since you have had children, it's time to discuss your options, because you don't want to live with this kind of pain for life.
As an aside, I also wonder if those shooting pains up and down your legs are due to sciatica and not your endometriosis.

Please talk to your doctor about the treatment options discussed above. He or she will be able to give you more information, depending on your specific case but please know that there ARE treatments out there that can help you. Will you schedule an appointment and keep us updated?

Nubianqueen,

I have so much empathy for you. I also suffered with endometriosis. I probably had it for about 20 years but the last 10 years were the most troublesome, since it tends to get worse before it gets better.

Were you ever on birth control pills? My endometriosis was controlled pretty well during the years that I was on the pill. I know that you have had a tubal ligation and that your family is finished, but I wonder if asking your doctor about going on birth control bills would be any help to you. Since they stop ovulation, they also stop the buildup of much of the endometrium.

Has your doctor ever suggested a laparoscopy to basically "clean out" all the old tissue lesions? I had two, two years apart. The tissue does build up again, of course, but I had so much that there had been scarring from the adhesions. Surgery, even laparoscopic surgery, is never something to be taken lightly, I know. But I got quite a bit of relief after the procedures.

I also hope that your doctor prescribes good pain medication for the intense days. You should not have rely on over-the-counter medication, because chances are you have to take too much of it to even get much help. My original GP was not well-versed in endometriosis, but when I found a gynecologist who was, one of the first things he said was that the amount of pain I was having was much higher than I should have to endure. Pain management is important here.

Perimenopause DOES actually bring some relief, as your cycles slowly move farther apart and your hormone levels decrease. But at 32, you may be many years away from perimenopause, so you are right to tackle this problem -- and its pain -- assertively.

Do you have enough solid information about endometriosis? I want to refer you to endometriosis.org, a site full of info, research, FAQs and links. This page lists books about endometriosis from different points of view. One of them may be perfect for you:

http://www.endometriosis.org/books.html

The most important thing I can tell you is that you need a doctor who is very familiar with endometriosis. Does yours fit that bill?