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Thank you to all who responded to my post 'Lap didn't take my pain away'
From: amy (anonymous@obgyn.net)
Tue Mar 23 14:11:07 2004
I want to thank you from the bottom of my heart for responding to my
post. You and the others are the reason I feel that I haven't lost my
sanity. I feel such a sense of emotion when I read other posts and see
how many women are in pain like me and how we all have that common
thread. No one can ever know the pain, both physically and mentally,
that this disease causes unless you experience it first hand. When I am
feeling really low and sad, I don't just cry for myself, I cry for all
of you as well. Together we can help each other to get through this in
the best way possible. This is just an obstacle for us and we can make
it. We have learned to appreciate moments that we can spend with others
without feeling any pain. We have learned to savor an afternoon outing
without sitting down every five minutes. We have also learned to take
control of our lives by not just listening to what doctors tell us but
by actually researching different treatment options and medicines and
talking to one another. There are so many things that we do have that a
lot of other "healthy" people don't have; a greater apprciation for the
little things in life.
Once again, thank you for being there, even though we have never met.
Amy
At Mon, 22 Mar 2004, Dianna wrote:
>
>I think alot of us can relate to you in one way or another. I am 23 and
>I just had my 10th lap just a month ago plus I had my gallbladder out in
>October. I just love how these doc think that we can just live like
>this. Obviously we cannot live like this or we would not be sitting in
>there office. My husband and I have been trying to have a baby also but
>I think its going to be put on hold as well. It is heart renching not
>being able to conceive but like you said sex is the last thing on your
>mind when you feel that bad or when the last 2mths all you have done is
>bled like me. I just finally stopped bleeding 11 days ago after 2 +
>months. I have never been given a reason why this happens to me in the
>10 years that I have delt with the endo, no laps can explain it. I am
>frustrated too because I keep getting the run around and like you I am
>tired, burned out and sick of trying the same ole thing over and over
>and it still does not work. Does anyone have any reasoning why someone
>would bleed as much as I do? Please help! Thanks
>
>At Sun, 21 Mar 2004, Annette wrote:
>>
>>At Fri, 19 Mar 2004, Kelly wrote:
>>>
>>>At Wed, 17 Mar 2004, amy wrote:
>>>>
>>>>I have been suffering with horrible pain for over 7 years. My doctors
>>>>have all written it off as cysts and said they were normal and a part of
>>>>my life. My pain has been too bad to be normal so I finally pushed for
>>>>a laparoscopy. I had my lap done Feb 18 and the results showed that I
>>>>have stage 2 endo, polycystic ovaries and due to my crohn's disease
>>>>(according to my dr.) my small intestine is stuck to my right ovary. The
>>>>doctor told me he removed the endo and cysts but could not disconnect
>>>>the tissue that was sticking my organs together for fear of perforating
>>>>my bowel. He said that I would have to have a general surgeon take care
>>>>of that. Well, I am 31 and trying to have my first baby with no success
>>>>so far. Because of this, the doctor said my best course of action is to
>>>>not have any treatment or further surgeries now and just try to get
>>>>pregnant. Well, less than one month after my lap, all my pain has
>>>>returned. I am so sad and depressed because I thought for once I might
>>>>experience some relief, even if it was only for a couple of months. I
>>>>can't imagine trying for a baby when sex is the last thing on my mind.
>>>>My pain is so unbearable that I am hardly able to walk or stand at all-
>>>>THIS IS NO WAY TO LIVE!!! I have had success with birth control pills in
>>>>the past and have decided to forget having a baby (which is heart
>>>>breaking in itself) and try to go back on b.c. pills after i get
>>>>through this period. I don't understand why my pain is so bad. i have
>>>>had to quit my job and drop out of life because of this. as i write
>>>>this the tears are just pouring. somehow, i feel that some of you know
>>>>how i feel and it makes me not feel so alone. thanks for listening and
>>>>i hope for you pain free days ahead.
>>>>thanks,
>>>>amy
>>>
>>>I know how you feel, sweetie! I am 23 and had my foruth Lap two months
>>>ago. Unfortunately, it didn't help and I am and have been in severe
>>>pain for a long time. Nothing seems to be helping and my life has
>>>diminished. I have een out of work for 5 months and I can hardly walk
>>>or do anything for that matter. I have stage IV Endo and just got
>>>married. The Dr continues to tell me to try to have a baby eventhough I
>>>might not be able to conceive. The endo has eaten away at the ligaments
>>>supporting my uterus and who knows if the uterus I have could even
>>>support a fetus. I have thoughts about it long and hard andhave asked
>>>for a hysterectomy. I have to wait two mmore months to see if the
>>>Lupron will help but if it doesn't then I am opting for the surgery. I
>>>know I am young but I am not living right now and I am emotionally and
>>>physically exhausted fromt he last 9 years of suregeries, pills, pain,
>>>shots, etc. I know what you are going through and if you need someone
>>>to talk to I am here. I have been through all the treatment numerous of
>>>times so let me know...
>>
>>I can totally relate to both of your stories. Although I am much older
>>and waited for years to start a family, finding out I had endo at 36
>>years old really threw a wrench into getting pregnant with my one and
>>only true love. I have had one lap and have stage IV endo. I had
>>bilateral endometriomas (ovarian cysts) and one was ruptured. The
>>surgeon had to take 2/3's of each ovary, which didn't leave me much to
>>work with after surgery. And especially at my age, trying to get
>>pregnant with 1/3 of each ovary was a major long shot. I went through
>>surgical menopause, didn't have a cycle for five months, began having
>>pain after the periods began again and was put on Lupron for two months.
>>I could hardly tolerate the Lupron and had severe hotflashes, mood
>>swings, migraine headaches and fatigue. It was horrible. I opted to
>>stop taking the Lupron after two months of hell and have been feeling
>>better since. It took a while to get the Lupron out of my system and I
>>will never again go back on that hormone treatment! It was worse than
>>the pain I experience with the endo. Currently, I'm in pain and take
>>pain meds when I have to, but I remind myself everyday that the pain is
>>better than the Lupron and all the side-effects that goes along with
>>that horrible drug. I have also decided not to go through IVF or any
>>other means of fertility treatments because of the health risks. I
>>would rather be healthy than put myself at risk just to have a baby. I
>>would much rather adopt a child than go through all of that. In fact, I
>>have started eating a healthful diet and have begun working out again
>>(I've lost 16 lbs.! yeah!), and I am feeling much better. I know I will
>>have to have a hysterectomy in the near future, but I feel more at peace
>>and more in control of my health than I was a year ago. I don't want
>>this disease to control me anymore. If you feel like you need to talk,
>>email me. I can totally relate!
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