Endometriosis - Howell,MI

Updated on August 19, 2013
L.J. asks from Howell, MI
7 answers

I was diagnosed with endometriosis early this spring. I had surgery back in April to remove what the doctor could see of the endometriosis, along with a cyst on my ovary caused fluid in my pelvis so that was drained. I also had an ablation done so no more periods, because they were so painful and heavy. I am fully healed from surgery but continue to have pelvic pain and it comes on quickly, it exhausts me, and laying down and sleeping is all that helps. My doctor is "managing my pain with birth control pills, and I am starting pelvic floor physical therapy next week. Once again I am home sick from work because the pain is overwhelming. I am only 32 so my doctor will not do a hysterectomy. Anyone else suffer from this horrible disease? And what do you do to help manage pain. I am active I like to run, and I am fairly healthy, though I have noticed I put on weight especially around the stomach possibly due to the birth control since before this I have never taken it before.

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M.M.

answers from Chicago on

If you have no more periods and have had an ablation (thus, kids are not an option)...why would he hesitate to give you a hysterectomy? You're only 32, but with the work you've had done, you're clearly not having kids. So what difference does it make?

I'd consult another doctor, honestly.
If they only take your uterus, you could be free of all of this and still have your hormones.

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A.M.

answers from Dallas on

Hi L.,
I had a situation similar to yours, and after a year of dealing with the pain and multiple surgeries my OBGYN finally agreed to do a hysterectomy. Have you seen another OBGYN for a second opinion? I was only 31 when I had my hysterectomy and I had no children, but after sitting down and talking with my dr., he finally agreed to do it. The pain, to me, was just horrible and nothing was helping it. Are you at the point where that is what you want to do? I hope that you can get some relief soon. Feel free to PM me if you have any questions.

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G.B.

answers from Oklahoma City on

Find a different doc. Although you are young this pain is taking over your life. It should end whether that means a hysterectomy or some other form of surgery.

I took Danacrin for my edometriosis. That was back in the 80's though. It is a male.....medication. It stops your periods while you take it and it gives your body a pelvic rest.

Since the uterus is not making the lining there are no cells to go to other parts of the body. The ones outside the uterus dry up and flake off. It basically clears up all the out of uterus growths if you take it several months in a row. This type of med should clear up the issues.

Once you stop taking the med though the lining of the uterus will start flowing and those cells will find the place they are getting out and go back and start the whole process over again. This is why a hysterectomy is often the only "cure" for this disease.

There were a lot of "stories" of how the cells got outside the uterus. The one I remember is sex during your period.

When a woman climaxes she bears down. The uterus contracts and if there is tissue/blood/stuff (On her period) in the uterus it has to go somewhere so it backwashes out the tubes into the abdominal cavity where it moves around and can eventually go to any spot in the body. Each month it gets triggered by the hormones and becomes it's own little uterus.

It sloughs off cells that move around and find someplace to attach to and the attached bits grow and cycle each following month, sending out more to do the same thing. So it never ends until the woman's hormones signal the end of menses.

I found a specialist that did a lot of work with this disease. Most women who have any signs of endometriosis are sterile. So it's odd that your doc won't do a hysterectomy.

The uterus, tubes, ovaries, all the surrounding organs and tissue get scars on them from the little fake uterus's as they grow, expand and contract each month. The uterus and other organs become stiffer with all the scars from the tissue adhering to the outside of it, the scar tissues don't stretch, they don't move the same way. SO if a pregnancy does start it usually can't grow beyond a certain point because the tissue can't move.

So I find it odd that a doc would not give a thought to hysterectomy in this instance.

If you find a doc who is a specialist in this illness I think you'll find a different style of treating it. You could do the male hormone, do some more removal of tissues, all kinds of stuff.

I do think giving the therapy a go would not hurt. You will learn something from it even if it doesn't help your symptoms.

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A.L.

answers from Montgomery on

I had this several years ago so badly that I had, 'cuts' on my vaginal lips. I had a D&C then I was, 'frozen' twice, a wand was inserted and then froze EVERYTHING pertaining to my female parts, that was in conjunction with heavy antibiotics. IT WORKED for quite a few years, I was told it would be VERY difficult for me to EVER have more children due to this & an IUD that had gotten into my left ovary & ruptured & became badly infected the year before. After my, 'freezing' I had THREE more children! Eventually I had a tubal ligation (age 25, can't understand WHY your Dr. says you are too young perhaps you need a second opinion on that, my oldest daughter ALSO had hers @ age 25).

As to your continuing pain I REALLY do think you need a second opinion, it sounds to me as if there is STILL infection somewhere or damage to the ovaries, etc.. I would go online & look for a teaching hospital that has a Woman's Wing/Clinic I find them to be the best for something that isn't presenting properly. As to the weight around the stomach that could be due to the BC pills, or could be that you are actually pooling blood somewhere. Has your Dr. done a sonogram ( can't think of the name...duuuuhhhh...the same thing you get when you are PG) or a CT Scan since the pain hasn't let up? Have you had a full blood panel done recently to see what your white blood count is? These are the things I would think should have been done for the continued pain, especially as bad as it is. I don't think that the PT should be started unless & until the severe pain is addressed there is always a possibility that it could worsen the pain and/or whatever is causing the continued problems.

I surely hope you get some answers and some relief soon, I am so sorry for your pain!

PS I neglected to say that after the freezing all of the infection drains out it was/is a long & messy process but it worked, this was quite a few years ago so I don't know if they still use this treatment but it was WONDERFUL for me! I hope you find something/someone to find exactly what is happening & put an end to your pain!

D.K.

answers from Sioux City on

Been there. I worked with a doctor trained in NaproTechnology. I had a hormonal imbalance. The pill only masks the symptoms and doesn't get to the bottom of the issue or work to correct it. Check out the Pope Paul the VI Institute and see if they have a trained doctor near you.

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M.H.

answers from Chicago on

I am not disqualifiing you diagnosis.. Before you do anything further.

Try going gluten free for 3 weeks. When my cousin eats gluten it knocks her out. I went gluten free and I do not feel bloated etc.. I was having pelvic pain, I cut out milk and gluten and it is much better. You can try it and see if it helps.

I hope you get the reliefe you deserve.

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J.K.

answers from Kansas City on

I have a very good friend that was diagnosed with this a few years back. She has had a horrible time so far, and her doctor is not ready to do a hysterectomy just yet. She is getting the birth control shot for her pain, and it helps her a great deal. I can't remember exactly how long it lasts until the pain returns, but I know a few times she's said she can't wait to get her shot. God bless you, I can't imagine living with that on a daily basis.

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