ENDO Messages for October, 2002: Re: What should I do next?

Re: What should I do next?

From: ami (anonymous@obgyn.net)
Thu Oct 31 22:25:45 2002

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Previous message: ami: "Re: Endometriosis and pain management choices -my story"
In reply to: anonymous: "What should I do next?"

At Thu, 31 Oct 2002, anonymous wrote: >please please go to an endo specialist to at least advise on your surgery.......
>Hi, I am new to the forum. I am not sure what my next move should be,
>maybe someone in the forum has a suggestion. My history-I am a 37 yr
>old w/ 2 kids (5 & 8). About 3 yrs before my first child, I had sharp
>pain on my right side which was thought to be an ovarian cyst (through
>US and IVP). After 3 months of BC pills and horrendous pain and almost
>being addicted to pain meds, the doctor did a lap which found that I did
>not have an ovarian cyst but a cyst on the right broad ligament which
>ruptured during all the time he waited (I am not sure he believed me
>when I explained my level of pain) and left about a 2 inch hole which
>needed to be repaired. The OB/GYN swears I had no endo. Because my
>symptoms after lap remained and I had identical pains on the same days
>each month I saw a new doctor who said I definitely had the clinical
>picture of endo and he did not care what the other doctor saw, many
>times endo is atypical. I at least felt better that he believed there
>was a reason for my pain. I lived w/ the pain, had a child and of
>course my pain returned after the pregnancy. I waited and lived w/ the
>pain until I had my 2nd child 3 years later so as not to take the chance
>that a doctor would mess things up inside. The year after the delivery,
>I could not take it anymore and went to a reproductive endocrinologist
>who did a 2nd lap and found endometriosis and adhesions which he got rid
>of but also did the LUNA procedure (nerve ablation) for my severe
>menstrual pain. After this surgery, my pain did decrease (so that I
>could live on only Motrin and an occasional Tylenol w/codeine) for about
>2 years. As the doctor told me, these nerves do grow back together and
>pain will return. Well...here I am 4 years later and the pain has
>absolutely returned for about the last year. Now, I have terrible
>ovulation pain which starts prior to and after I ovulate as well as a
>week of menstrual pain leading up to and including the first 2 days.
>Therefore, I am in pain 50% of the month. I always have my pain on my
>right side even with ultrasound proof that I am ovulating on the left.
>Yesterday, was the last straw. I had severe pain for 2 days and was up
>all night and knew that something had ruptured or was really wrong.
>Called the doctors office and they sent me for the usual Ultrasound
>which just showed fluid in the cul de sac. So of course, they feel
>nothing is terribly wrong, "your cyst probably ruptured and you can take
>pain pills to get through this". My choices as they always seem to be
>regardless of which doctor I am talking to is to go on Lupron which I do
>not want to do or have another surgery. I am interested in having
>surgery but I feel like I am once again going into it completely blind
>and w/o a prognosis--just "we'll see what's there when we look inside".
>Does anyone have info on specific tests or things that I should do
>before agreeing to another surgery? Should I use another reproductive
>endocrinologist to do the surgery since they are more familiar w/ endo
>or should I use some other type of doctor/surgeon? I have moved to a new
>state so I am not able to use the last specialist. I am sorry this is
>so long and drawn out but I am so frustrated and uncomfortable agreeing
>to surgery again. Thanks in advance.

Previous message: ami: "Re: Endometriosis and pain management choices -my story"
In reply to: anonymous: "What should I do next?"

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