Re: She Says I Have Endo And Need Lapro- What Do You Think??
From: Leyna (anonymous@obgyn.net)
Tue Oct 28 01:23:57 2008
Bren,
Thank you for your advice. I'm actually scared to death of surgery, and
I don't want to do something because I'm in a rush but my pain is
getting worse. Stabbing pains that make walking uncomfortable for short
periods of time.
Fortunately, my husband and I are not planning on having a child of our
own, we have decided prior and separate from all this to adopt if we
ever feel we are ready to be parents... so I am not worried about
fertility problems or even the possibility that I may have to have
reproductive organs removed. But the state of our intimacy right now is
having a terrible emotional effect on both of us... it's nearing a year
since these problems started and I think that might be harder to go
through than the pain.
I live in Richmond, Virgina... and I would love any information anyone
could give me on endometriosis specialists in the area.
Thanks so much for your thoughtful advice,
--
Leyna
At Tue, 28 Oct 2008, bren wrote:
>
>Hi Leyna,
>I'm sorry to hear about your symptoms and the pain you are experiencing.
>It is also very frustrating when a doctor just throws you around,
>"pushes" you out the door, or just medicates you more rather than really
>treating the cause of your pain and symptoms.If you have endo, it's very
>possible that your symptoms have been masked for years while on birth
>control as this is one of the "treatments" (not a cure) for endo to
>minimize any types of endo growths and its symptoms and pain. Also,
>many women go undiagnosed until they start to have debilitating pain
>(many go for years thinking that their menstrual pain is "normal" due to
>some "brainwashing" done by unexperienced Drs.), or are at the
>reproductive years and their symptoms/pain get worse, or some who
>"accidently" find out they have endo because they are having difficulty
>getting pregnant, etc... My best advice to you as w/ probably many
>women on this forum, especially if you have good insurance, is to make
>sure you go see an experienced endometriosis specialist who does exision
>surgery. You can always research for one online, or if you inform us of
>which area you live in, then many women on this forum have wonderful
>information they can offer you for endometriosis specialists close by.
>If you do have endometriosis, you will definitely want to have surgery
>done w/ not only one who is experienced, but one who actually excises
>("cuts" out) the endo, adhesions, and cysts, etc etc. There's no cure
>for endo, but all the women who have had exision surgery for their endo
>are the ones w/ "success stories" and relieving them from all their pain
>and symptoms. Also, it is less likely for endo to grow back so quickly
>w/ exision surgery,...whereas if the surgeon just "lasers" or burns out
>the endo, it is most likely that the endo will grow back and you will
>end up sufferring again along w/ possibly more problems such as scar
>tissue from previous lap/abdominal surgeries and having to go back for
>another lap. I would also ask for a fertility test just in case if you
>do end up being officially diagnosed w/ endometriosis (that is, if you
>are planning to conceive in the future) as endo can cause infertility
>(not to frighten you...just an fyi..there are many women w/ endo who
>have had success w/ getting pregnant and having children)...you should
>also find out if you have a family history of anyone who had/has
>endometriosis or adenomyosis as this will be informative @ your doctor's
>appt w/ the endo specialist. Well,I hope you feel better as many of us
>suffer from debilitating pain and symptoms on a daily basis. I hope
>this info was helpful. Take care.
>
>**Bren**
>
>At Tue, 28 Oct 2008, Leyna wrote:
>>
>>Hi All,
>>
>><b>My name is Leyna, and I recieved a tentative diagnosis of
>>endometriosis.</b> Here's why it's tentative/a backstory:
>>
>>In the spring of '07 I began getting tension headaches which grew worse
>>until September '07, just after I got married, I began getting terrible
>>migraines. I immediately went to my PCP, and due to my headaches, my
>>weight at the time (265 lbs), and recent diagnosis of reactive
>>hypoglycemia (which can both be signs of diabetes down the road), she
>>prescribed me a medicine called Topamax. Topamax is a miracle medicine-
>>not only are my headaches 99.5% gone, by the end of the year I had lost
>>40 lbs that I hadnt been able to lose through diet change or excercise!
>>
>>However, in November of '07 I began having menstrual cramps. This was
>>extremely unusual for me because I have been on birth control pills
>>since I was 15 due to severe cramping and nausea and and havent really
>>experienced those since. The cramping wasnt terrible by any means- just
>>uncomfortable- so I ignored it. Until around Christmas, when sex began
>>to be painful. At first I thought I'd just hurt something somehow and
>>was sore- but it continued for far too long to be normal. I feared
>>something very serious was wrong, so I set up an appointment with my
>>gyno.
>>
>>She gave me an exam and said everything looked and felt fine. Then she
>>reviewed my medications with me, and said that my pain could be due to
>>the Topamax having a bad interaction with my birth control- she upped
>>the hormone level in an attempt to compensate, since I did not want to
>>stop taking the Topamax or the birth control. By February this year,
>>nothing had changed except that I began being queasy during my cycles
>>and experiencing the discomfort outside of the cycles, so she gave me an
>>ultrasound. The ultrasound revealed a cyst on my right ovary. This
>>upset me alot, but she was still convinced it could have been caused by
>>my medications, so she switched me from the pills to Nuvaring, hoping
>>that if the meds were absorbed into my body in completely different
>>ways, they wouldn't have a chance to interact badly. She scheduled me
>>for another ultrasound in three months to see if there was any
>>improvement.
>>
>>My ultrasound in May '08 revealed that the cyst had neither gotten
>>bigger, nor gotten smaller. Again, the only change were my sypmtoms...
>>the pain is worse, more frequently appears outside of my cycle, and
>>occaisionally I experience nausea with the pain. My gyno seemed to run
>>out of ideas- she explained that I could have endometriosis, which was a
>>cause that had NEVER come up before. She said that the only was to
>>check for endo is to do a laproscopy, which they would need to do to
>>remove the cyst anyway.
>>
>><b>Sooooooo</b> here are my issues (aside from possibly having
>>endometriosis):
>>
>>I know that my symptoms (after reading up on endo, I have others that
>>match- such as back pain and frequency urinating, even the cyst) match
>>up to endo... but... I guess I feel like I'm more sure I have it that
>>my doctor. That is to say... if it was such a real possibility all
>>along, why didn't it come up earlier? Why did my doctor play with my
>>medications for so long first? I mean, has anybody even ever heard of
>>medication interactions causing pain or cysts?
>>
>>I guess what I'm getting at is should I get a second opinion or just
>>start going to a different gyno. I don't think she's wrong, I'm just a
>>little upset at how she came to the diagnosis.
>>
>>I delayed scheduling surgery because I was not on insurance that would
>>cover it, and my gyno was moving to a different practice in August- and
>>in August my husband lost his job, so I have had to delay further. He's
>>gotten a job with the state now and our medical benefits, once they
>>start in November, will be wonderful... but I want to be sure of what
>>I'm doing under whose instruction before I decide to do anything. What
>>do you think?
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