Living with this disease!!!! Contributed by jenhawkeye

I am a 29 year old mom, wife, NICU nurse. I have been living with endo for approx 18 months. I am coming to the breaking point with this disease. I will start from the beginning:

I have had one biological child in 1997. I developed pre-eclampsia at 27 weeks. We held off delivery until 31 weeks. I was on strict hospital bed rest. I am an NICU nurse so my fears were huge. I have since had issues with hypertension. I was scheduled for a tubal ligation one year ago because birth control was not an option for me. The desire for me to have a biological child was not that strong. We have adopted since then. My periods had been becoming increasingly painful. I had spoken with my GYN MD about this. He descided to do exploratory surgery with the tubal.

Well once in surgery my MD found 2 areas of endo inutero and 2 in the pelvic cavity. He hoped with the lap that all of the sites were taken care of for the time being. Well the lap worked for 4 months. By Christmas time of 2002 I was in so much pain that I was vomiting. Tylenol with Codeine was not working. I was not able to work… Which was very difficult for me. I love my job. I could not function as a mother, wife, lover etc….

So my MD wanted me to try Lupron injections. I was willing to try anything by this point. He kept telling me we were not going to do anything drastic (hyst) because of my age also he wanted to be sure we were dealing with the same thing again. I got very frustated with him because here I was in agony effecting my whole life and he is telling me to hold out. I work with this Md on a continuing basis with my job. I trust his judgement but I was beginning to have my doubts. The first month did not show any relief. I tried one more month of injections and proceeded to get a 2nd and 3rd opinion. This was hard for me to do because of the trust and respect I have with him with my job. All the MDs felt the I should see if the injections worked for one more month. Well they did!!! I got injections from January until June. I began to have bone density loss so I had to only do the 6 month cycle. Also my body was becoming “immune” to the injections.

So here I sit….. I am now taking 30mg doses of Provera. I have now been taking this for 3 weeks. As of two days ago the same exact symptoms have started with increased pain. I am back to using the tylenol with codiene when i can. No bleeding, but everything else that acts like a menses of before. I have spoken with my MD at length today. I am going to increase my Provera dosage but he utimately feels the next step is a hyst with ovary removal. And then explore to see were in the pelvic cavity has any sites to burn. I feel this is a tremendous step for him to say.

But I have done alot of research. I have my doubts about this being the next step due to alot of women not getting relief after this. My husband is worried sick. Our love life is next to nothing for the past month. I find it very sad that my 6 year old said to me yesterday :Mom you are not pink anymore. You look like Casper (ghost). Are you sick?

Does anyone else out there have any suggestions? I want to have all the information or paths they have taken that I could try. I don’t want to make a hasty desicion. Also being a nurse, I want as much proof as one can get………

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I read your story today. You said something about your doc wanting to “burn” if there is anything in the pelvic cavity. Research shows that ablation is the best way to deal with the endo because the tissue is actually cut out, as if to remove the root. Think of it as finding a black spot in a potato. The best way to get rid of it is NOT to use a peeler, and just scrape the layers, but to dig it out, thus making sure that you remove the entire spot. I’m not sure if you are aware of this process, but I would highly suggest you look into this, and see a doc who practices this. Also, please do not worry about hurting your doc’s feeling by seeing a different doc. This is about you and your health. If he can’t accept that you go elsewhere, I would question why I would put my health in his hands. Feel free to contact me. I am involved with the ERC.