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Re: I need some info

From: Sharon (anonymous@obgyn.net)
Tue Mar 29 16:34:15 2005

Hi, Laura - I'm new to this site, too. My endo is not as severe as yours, but I can imagine what you're going through. I also had severe pelvic pain as a young girl that improved with birth control pills in my late teens. It returned as soon as I stopped the pills, in my early twenties. I had two miscarriages around 26 years old and have been trying to get pregnant again, ever since (I'm now 34). I also have fibroids and had to have a myomectomy to remove one when I was around 30. I did "injectibles" when I was 31, but did not get pregnant - and vowed not to do them again, as it was emotionally draining to go through all those shots (I hate needles!) and only have it fail. At 32, I had a Lupron shot to help with the endo - which alleviated it for about 2 years. I also have sinus problems and skin allergies (which I know, from research, are related to "estrogen-dominence" which causes the endo). Over the last year, my endometriosis became excruciating. I went to an acupuncturist and completely changed my diet (no wheat, alcohol, dairy, red meat - more beans, rice, fish, organic chicken and veggies) and began to exercise 5 times a week - I dropped about 30 pounds. I also tried acupressure which REALLY helped with the constant pain, even more than the acupuncture. However, the item that helped the most was a drug called Femara that my OBGYN/Fertility Specialist put me on. It's a breast cancer drug that suppresses the estrogen. They've recently started using it to treat endo. I had minor side effects, like hot flashes, but felt better and better as each month passed. (He put me on it for 4 months.) Two cycles ago I allowed him to use the Femara like Clomid to help me get pregnant. Unfortunately, for me, that was a horrible mistake. I've spent the last month and a half battling terrible side-effects - lots of pain, cysts on my ovaries, blurry vision, dizziness, nausea, increased pain with intercourse (like you can get pregnant when it hurts this much???), unbelievable fatigue - and on top of it all, I didn't get pregnant. I vowed never to do fertility drugs again - my body just can't handle them. My goal is to become more and more educated on endo and to limit my exposure to toxic items (cleaning products, bleached paper, etc.). There are some very good books on natural healing for endo at Amazon.com that have been very helpful to me. Regarding your nose bleeds I have read that endo can travel all over your body and even attach to your nasal tissue - which would cause the nose bleeds during your period. I've also recently read that getting pregnant will not make the endo go away - it will just subside during the pregnancy and usually returns about 10 months after giving birth (around the time you stop breast feeding). My mom had endometriosis, too, which became worse after having her third and last child - she had a full hysterectomy in her thirties and the doc found endo and hundreds of tiny fibroids. It's a baffling disease. Regarding the Crohns, my cousin had it and my heart just goes out to you on that one!!! I wish I had more info for you. I would suggest looking into the diet modifications and the Femara - it really helped me out.

At Tue, 29 Mar 2005, anonymous wrote: >
>Hey Laura. I have also suffered from endo but my case was mild compared
>to many other women including yourself. I can sympathize with the lower
>back pain and I wish that I could offer you some advice...but
>unforunately I can't. Hopefully someone in the forum can help you with
>questions. Just know that you are not alone. My thoughts go out to you
>right now. Please keep us updated on your follow up appt and try to do
>as much research as you can between now and then. Sometimes this helps
>with questions that you may not have already thought of. Keep your chin
>up!!!
>
>At Tue, 29 Mar 2005, Laura wrote:
>>
>>At Mon, 28 Mar 2005, Laura wrote:
>>>
>>>I am very new to this site but I am grateful that I found it. I felt
>>>very alone until I came here. Up until now, I had been just going by
>>>what minimal information that my doctor gave me. I have an appointment
>>>on Thursday as a follow up to my third lap and before I started
>>>searching through the archives, I wanted to see what questions I should
>>>be asking the doctor. Here is what I know so far...I have been
>>>suffering since I was 13 years old with extreme pelvic pain. I was not
>>>diagnosed with endo until 9/01 when I had a lap to remove my appendix
>>>and several large ovarian cysts. At that time I was also diagnosed with
>>>Crohns disease. In 2/03, I had my second lap. They removed the endo, 4
>>>more cysts, scar tissue and adhesions. My doctor said that the
>>>adhesions were so bad that it looked like spider webs inside. In 11/03,
>>>I started lupron. It made me sick as a dog but it did alleviate some of
>>>the pain. I had my third lap and d&c last week and I haven't spoken to
>>>the doctor yet. I have had cervical stenosis for at least the past 6
>>>months. Extreme lower back pain which is constant and pain during
>>>intercourse since I lost my virginity. Also, I have had persistent
>>>sinus problems with nose bleeds that seem to flare up that time of the
>>>month. My doctor never told me that there are stages of endo and has
>>>not really explained the disease much to me. All he keeps saying is to
>>>get pregnant which to me is very frustrating. That is if I can get
>>>pregnant because he did mention that I may not be able to. I am trying
>>>so hard to learn about this disease. Can anyone please give me some
>>>quick tips on what questions I should ask so I can be prepared for
>>>Thursday? I know I won't know everything there is to know in three days
>>>but any help that anyone could give me would be greatly appreciated. In
>>>the meantime, I will search the archives. Sorry for the long message, I
>>>am just desperate for some help and guidance. Thank you!

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