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Re: cently diagnosed...scared
From: CCANNA (anonymous@obgyn.net)
Mon Jan 30 07:20:05 2006
Thank you so much for the "book". It is wonderful to know there are
others out there who know what I am going through. Now I have to find a
birth control that will work for me. I hate testing out birth
control!!! Thanks again!
ccanna
At Fri, 27 Jan 2006, anonymous@obgyn.net wrote:
>
>I've posted so much the past few days!!! I just wish I read all of these
>message boards from the get go so I didn't feel so alone the first few
>months.
>
>I'm so glad you found a good doc. I pretty much was in a similar
>situation where I went to so many doctors that didn't even mention endo
>- had all kinds of tests done that came back normal and these looks of
>it just being a women's period thing and sorry we can't find anything
>abnormal.
>
>After finally finding a good GYN that knew the word endo and it's
>details, I really improved after the lapo with the hormone therapy. I
>was already on BCP (ortho tri cyclen) since 14 years old (I am also 24
>now) because of horrible periods from the get go. So after my surgery
>my doc tried the continuous birth control for 3 months then took the
>placebo week to minimize the number of times I have my period, thus
>minimizing the number of times my body would screw up during my period.
>That, however, still lead to excruciating pain the week before, during,
>and after my period. So he put me on the depo provera shot with no
>estrogen now. Fortunately, I haven't had all the crazy side effects of
>depo like some women (constant periods). In fact I spotted a few times
>and after a few months being on it periods were totally gone. I'll get
>my pain, after being on it for over 2 years, but not nearly as severe,
>and will spot every now and then but it's been a blessing to have depo.
>My doc said I shouldn't need the surgery again since I've totally
>eliminated having a cycle, unless for some reason I dvelop unbearable
>pain again and then I will probably have to consider surgery again. But
>the pain's been at a level I can definitely deal with (not saying I love
>living with it, but I no longer turn pale, get cold sweats, and can't
>comprehend someone speaking to me when I get my pain).
>
>I also have a boyfriend of 3 1/2 years where we will want to have kids
>in the next 2 or 3 years (in law school so have to wait) and I was
>kind've fearful that waiting even longer for kids because we are
>continuing school might screw up some chances of good fertility. But my
>doc said I was in end of stage 2 and that I shouldn't worry about it.
>When the time comes, I shouldn't have problems since I had the surgery
>and am doing the hormone therapy. But that if there does happen to be
>problems IVF usually helps in a major way. I've heard some women say
>after trying once they got pregnant. Some women never even have IVF and
>get pregnant - may take longer than expect. For me - being on depo will
>probably delay it further. The shot lasts for 3 months at a time but
>when you stop to try to get pregnant it can take up to 18 months for
>some women to start having regular periods again and get a good chance
>of getting pregnant.
>
>I wouldn't worry so much about the pregnancy factor until you really
>start trying and noticing problems. Then go back to your doc and see
>what options you have then. You do have one less ovary now so it will
>probably reduce chances of getting pregnant immediately. I'm thinking
>you'll have to try for a bit - but don't lose hope or worry! From all
>the billions of websites and books and message boards I've read, most
>women who do experience problems getting pregnant, end up getting
>pregnant eventually with help or patience. I've mostly heard of women
>who, unfortunately, were advised by doctors to get a hysterectomy as a
>FIRST option, lose the ability to have kids. Most everyone else had to
>put alittle effort into, but got pregnant.
>
>According to my doc - hormone therapy is vital after a lapo to take care
>of the endo and control it beyond, since the lapo is not a resolution to
>endo, but a way to diagnose and reverse the adhesions/scar tissue that
>already occurred. The key is to prevent it from developing again and
>that's where birth control comes in (or sometimes those drug treatments
>like Lupron that can involve some serious side effects.)
>
>Sorry - I wrote a book! Hope you hung in there.
>
>At Fri, 27 Jan 2006, CCANNA wrote:
>>
>>First of all, I would like to say that I am grateful to find this site.
>>I would like to also describe my situation...I'm truly sorry if this
>>gets to long...please keep reading. I had pain and discomfort for
>>approx. 2-3 months before my gynocologist discovered a mass on my left
>>ovary, orignally believed to be a dermoid. However, laproscopic surgery
>>proved it was an endometrioma. I had my left ovary removed due to the
>>cyst and adhesions. The entire area was the size of a grapefruit and my
>>ovary was fused to my bowel. Anywho, after surgery my dr. told my
>>family and boyfriend (husband soon) that I should probably think about
>>having children sooner rather than later. At my post op, I was
>>extremely disappointed because I was told that I PROBABLY had the
>>beginning stages of endometriosis. Ok....that didn't tell me much and
>>it scared me to death. She gave me some options: lupron, birth control,
>>or get pregnant. I decided on the birth control, Yasmin to be exact but
>>after the first two pills I got heartburn so darn bad that I stopped
>>taking them...not sure if that was caused by the pills but I hadn't
>>changed my diet and this heart burn, or chest pain, was horrible. I for
>>the next few months all I could think about was "probably
>>endometriosis". Then I started thinking back...my boyfriend and I had
>>been dating for 3 years, about a year and a half ago we stopped using
>>any type of birth control...not WANTING to get pregnant, just being
>>irresponsible. We basically considered ourselves LUCKY that we hadn't
>>had any ACCIDENTS (I know that is a horrible way to put it), but now
>>that this was happining, I was wondering if it wasn't luck, but the
>>endometriosis. In the mean time, I started feeling pain on my right
>>side. Oh great. I decided to consult a different dr. One who I had
>>heard excellent things about. My appt this last Tuesday and, boy, did I
>>find out ALOT more. After hearing my story, especially after hearing
>>about the endometrioma, he told me I definitely had endometriosis and,
>>as he put it, a decent case of it (stage II or III, this is his guess
>>w/out doing another lap). He told me I probably have it in other places
>>besides the ovaries, hence my lower back pain and painful intercourse.
>>He also suggested hormone suppression for pain control. I am going to
>>try the birth control again...my first question...What type of b.c. do
>>any of you recommend? The dr. also gave me helpful info about what to
>>do when we actually try to conceive. He was awesome.
>>
>>I just wanted to share my story with you all. I am still very scared
>>about knowing I have endometriosis, especially since I am only 24 and
>>want so desperately to have children. Like so many of you all out
>>there, I am also so frusterated with those out there that don't
>>understand that we have a...disease. We have pain. We have something
>>"wrong" inside of us. We have to live with it! I am sorry this is so
>>long...congrats for making it to the end of my story! I am welcoming any
>>comments, suggestions, anything anyone wants to post. Thanks again,
>>CCANNA
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