Re: my story and a few endo questions
From: Dena (anonymous@obgyn.net)
Tue Jul 16 16:52:52 2002
Hi Daisy,
I'm so sorry to hear that you are going through so much. I wish I could
offer some good advice for you. If everyone knows what area you live
in, they might be able to suggest a good doctor near you.
With all your poor body has been through, I would definately suggest not
to try Lupron. It is too great a risk for possibly having temporary
relief.
Take care of yourself. I know it's such a hard thing to deal with but I
too remind myself that although this is horrible and no one should have
to endure such pain, this is making me a stronger and more educated
person. I definately cherish the less painful moments and make the most
of them!
Hope you find relief soon. You are in my thoughts.
At Tue, 16 Jul 2002, Daisy wrote:
>
>I am 19 years old and I am about to start my Junior year in college. I
>was diagnosed with endometriosis, after having chronic servere pelvic
>pain for a little over a year. With my early breast growth, I was
>presumed to get my period by 11. With continual questioning of my
>doctor, by 15, I was quite nervous that I had not gotten it. That year,
>I had a day of extreemly light spotting, and that was it. When I was 17
>I had another day like that. That was all of the natural periods I had
>had. Concerned, I went to my ob/gyn. (well, at that point it was
>mother's and soon to be mine). They induced my period, and put me on
>birth control. I started to bleed very heavily, and it continued for 3
>weeks! They changed the pill two more times, and the bleeding happened
>each time! At this point in time, I was informed by my gastro to go off
>the pill, feeling that this may be where my chronic pelvic pain was
>derrived from. I had gone to the emergency room at school for the pain.
>They informed me that it was menstrual cramps. I informed them that I
>was just finshed my period. Needless to say, they dismissed me with
>some percaset, and told me that it was meerley cramps. After another
>week of pain, I went home to my family practitioner. He was insistant
>that he thought I had kidney stones. He ran test after test, and each
>one came back negative. A week later, he gave up, and told me to go to
>the emergency room, and see what they had to say. I had both an
>internal and external ultrasound done. They came back normal. I had
>blood work done. That all came back normal. I was introduced to a
>gastroenterologist. He was an extreemly nice doctor. He was very
>concerned as to why I was having these pains. He told me to go off the
>birth control pills that I was taking, hoping that that was the cause.
>It proved not to be, and I did not get my period again until 19. With
>him, I had a colonoscopy. Other than a small polyp, which came back
>uncancerous, nothing was found. He went through, and tried different
>things for me, hoping to elleviate the pain. I finally stopped going,
>because I had a short spell of relief, and wanted my summer off. When
>the pain returned, I was angry at myself for not persuing the cause
>previously. I called my ob/gyn, and made an appointment with the nurse
>practioner there. She gave me a pelvic exam, and said everything looked
>normal. She then recommended that I have a laporoscopy to check for
>endometriosis. My doctor was reluctant to preform the surgery, feeling
>that I did not have ALL of the symptoms, so therefore I must not have
>endometriosis. He did, however preform the surgery. I had the
>laporoscopy done in Novemeber of 2001, which was when I was diagnosed
>with endometriosis. He said it was a fairly mild case, and did not
>understand why I was in so much pain, if the woman who had the surgery
>after me, was covered, and had barely any symptoms. Obviously he did
>not know much about the disease, which put me on edge. At the post-op
>appointment, he discussed wanting to put me on Lupron-Depot. I was
>extreemly nervous about placing my body under that type of treatment, at
>19. When I questioned him about the treatment, my age, and my lack of
>periods, he was not informative, and pushed that I just go on the
>treatment, and he'll deal with other things later. Concerned, I tried
>to contact a specialist. He never returned my calls. Defeated, I gave
>up on trying, and just continued life for a couple of months. Luckily,
>a friend of a friend (you probably know how that works) knew someone who
>was a great endocrinologist. I made an appointment with him
>immediately. He has decided to treat both the endometriosis and lack of
>periods, feeling both as equally important. He informed me that my lack
>of periods could lead to higher risk for endometrial cancer. So he
>induced my period, and put me on a pill continuosly. I have now been on
>the pill for a little over 5 weeks, and am still bleeding. I have not
>stopped since it was induced 6 weeks before. To make matters worse, the
>pain had come back a little bit ago, and is starting to be fairly bad
>again. I contacted the doctor, and he gave me a 10 day supply of
>permarin, to help with the bleeding. It has not helped. I am
>frustrated and tired of dealing with doctors, and them not knowing what
>to do with me! I try to keep a positive attitude about life, and
>whatever doesn't kill me, will make me stronger. Some days it is just
>SO hard! I want to have a family some day (in the not so distant
>future). I worry about the link to infertility, especially because I am
>so young. I also worry about the possibility of this pain not just
>being endometriosis, but actually being endometrial cancer.
>Occassionally, I get the 'why me?' attitude, and just sit and cry to my
>boyfriend. It is not easy, and I hold an extreemly high regard for
>others that have this disease, or any that keep a great attitude about
>life. I was wondering if anyone knows anything about the connection of
>these problems? Or if anyone else has had similar problems? Is there any
>type of treatment I should be seeking, or seeing a specific type of
>doctor?
>
>--
>Thanks!
>Daisy
>
--
Dena
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)