Endo Hell For So Long Now...

I've been putting off this story because I thought I was healing. I am not. I am lost, alone and in pain.

My mother, aunt and my grandmother have all suffered the same.

All I can do is cry and scream, telling me to relax is like saying "It's just temporary."

I feel am never going to be a mum....nobody will take me seriously. I have Cerebral Palsy, use a wheelchair and have a long distance love (EDIT: am now single since May 2009). The current gynecologist I'm with just believes in stopping menstruation but not exploratory things. After many drugs and a big surgery at 15, 16 years of hell just laughs at me. I bleed, contradicting advice because when I stopped periods, I felt neutered, dried out and empty.

I'm sorry for being so down today, I'm mid cycle and being ripped apart...

TheRealWoman TheRealWoman
31-35, F
12 Responses Mar 3, 2009

I think you should look into getting a different doctor. A good doctor will try his/her best to get you out of pain and preserve your fertility (if at all possible of course). I lucked into getting into a good doctor with experience in endometriosis, but I copied tips for finding a good doctor from another forum in the hopes of helping some of the ladies in pain here. Firstly, don't be afraid to travel for a good doctor, and don't ever give up. Giving up is condemning yourself to a life of pain and you do not have to live that way.<br />
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Here are some tips that we hope will be helpful! Remember, not all doctors who claim to be endometriosis experts really are, so do your homework!<br />
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1. Check to see if there are local endometriosis support groups in your area. The women in these groups may have the names of doctors in your area who might be able to offer help, even if they are not endometriosis specialists.<br />
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2. Check the various endometriosis websites and forums. You could consider the names of doctors mentioned on those sites and you could consider the ones who have been interviewed, written articles, or are part of the site’s advisory team.<br />
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3. Do a web search for your area + endometriosis specialist.<br />
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4. Call area hospitals to see if they have an endometriosis department and ask for the names of any physicians affiliated with that department.<br />
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5. Check the AAGL.org site.<br />
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5. Consider the list at the top of the Endometriosis Support forum which contains the names of some well known and respected specialists along with the names of physicians members have recommended ba<x>sed on their personal experience with the doctor.<br />
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6. Consider a gynecological oncologist, reproductive endocrinologists, or a gynecological surgeon who specializes in minimally invasive surgery. Check with each to see if they have had experience successfully treating multiple patients with endometriosis.<br />
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I know how bad the pain can be, and I'm so sorry. I hope you can find a better doctor to at least reduce the severity or frequency of the pain.

First of all, don't be sorry, we all know the pain. Second of all, you need to consider maybe finding another doctor. 17 years ago the doctors wanted to take out my ovaries. If I would have done that I would have never had my two beautiful little boys. Don't get me wrong it was a long tough road to have them, alot of tears for me and my husband. I think I went to 6 different doctors before I found one that would help me and not butcher me up. If you are looking to have babies I will tell you a secret that worked for us. We were put on a schedual to try every 36 hours regarless of the pain or time. It became a job that I sadly ended up hating in the end of a very long 6 months. Finally, I was given some advice and figured I had tried everything else I might as well give it a shot. You count 10 days from when you start you period and you try everyday for 5 days. When you are finished you do not get up to go to the bathroom or take a shower. You grab a pillow and put it under your butt and put your legs and butt up against the wall with you legs up and your pelvic lifted with the pillow and stay there for 20 minutes. Your partner may look at you alittle wierd but this worked the first time I tried it for both of my kids. I had tried for over a year in a half to try with my first. The month I got pregnant I was going in to talk about either artificial incemination or invitro firtilization. I was so happy and excited. It was a difficult pregnancy due to all of the scar tissue from the endometriosis and laperscopies, but in the end it was totally worth it. It made me really appreciate what I was FINALLY given. Good luck to you and I hope everything works out for you.

I am Australian and do not like advertisements, tasha.

Hello my name is tasha I have had Endometriosis myself for over 15 years.. I have felt like you as well.. I have been in pain for a very long time and the endo has always effected my life since I have it .. I just wo uldlike to say you are a strong women and you are not alone.. Just this month I have been taking this new product which is called naturespearlproducts/uzalledwards.com.. I have been taking this product for 2 monthes now,, I have been feeling so much better than i have felt in years suffering with my endometriosis.. It has help me be able to have more energy, less mood swings, and able to stay out the bed and do the things I want to do with my life with out endo hindering me,, I have been winging myself off the pain pain medications.. my bowel movements has been less Painful and i am going more often.. I am so excited I found this product it has been a true blessing to me and i hope women with endometrious try this product as well.. it will start to change your life.. naturespearlproduct/uzalledwards.com there offering a free 30 day trial to try for 30 days to see for yourself what the product will do for your endo pain or any other pain you might be living with.. endometriosis go away don't come back another day..

I hope things improve... As I've said before I take you seriously, and if you lived near me I'd be just as interested in hanging out with you and/or dating you as I would anyone else.<br />
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Australians are cool... Unfortunately mostly they all live half way around the world in Australia :-D

Hugs, Fe...<br />
And a nice, long belly rub :-)

I agree with CopperCoil, I can't imagine how it must feel, either. But, I'm glad you wrote this because I think some women are really hurting physically and don't tell anyone, but they take it out on the rest of us verbally. If we just know what is going on we can at least be sympathic.

*kisses your boob".. oh i mean booboo :) seriously though i cant imagine, just know i care that you are suffering in so many ways right now and wish there was more i could do.

I know how you feel.. It is really a tough world to live in when dealing with this.. there are good days and bad days and they seem to smudge together at times. endometriosis makes women moody, having no energy and always in pain. I hope my blog can help you know that your not a lone in this battle. there are so many women out there with this. Praying for healing..<br />
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http://brandedwithendometriosis.blogspot.com/

((((((hugs)))))<br />
A Healing Prayer<br />
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Oh Great Goddess<br />
Mother of Mercy and Healing<br />
<br />
Send the energy of Hygeia<br />
to nourish from Her Sacred Bowl<br />
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Send the energy of Brigid<br />
to heal with waters of Her Sacred Well<br />
<br />
Send the energy of Demeter<br />
to restore life to withering cells<br />
<br />
Send the energy of Quan Yin<br />
to bless the healing with peace<br />
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Send Your healing wisdom to the body <br />
to restore its sacred balance<br />
<br />
Thank You Great Goddess<br />
Mother of All Life<br />
<br />
blessed be...<br />
love and healing to you sister...x

Endometriosis robbed me of motherhood and a sex life with my husband. I say NO! in capitalI letters now to anyone that tells me I'm not a real woman because I didn't push a child out from between my knees. <br />
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I have never met a doctor male or female that took Endometriosis as a serious diease. Let their hopes of a family of grandchildren be crushed and they may change their mind.

No male has a clue as to what you are going through. No male fully understands a real woman’s NEED to be a mother. <br />
I wish we lived next to each other because we could have wheelchair races on over cast days. I can’t go out side when it’s sunny. I’m not a vampire I’m just photophobic…DD