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Re: Endometriosis & Hysterectomies
From: Barbara (anonymous@obgyn.net)
Thu Jun 29 15:53:56 2006
I noticed that you mentioned dysplasia and hope that you can help answer
some of my questions. This past January I had laser ablation of my
cervix for dysplasia. I was told I need to do Re-PAPs every 4 months
for a year and then every 6 months after that. My Dr here (I've just
been here in El Paso less than a year) says that it's not too likely
that it'll recurr but I find that it really makes me anxious to think it
may come back. I've heard that PAPs are not too accurate, so I worry a
little that it'll come back and they'll miss it. Do you have any advice
or suggestions? I'd really appreciate it. Usually endo is at the top of
my list, but the dysplasia has me a bit shaken.
Barbara
At Wed, 28 Jun 2006, barefootbabi wrote:
>
>Thanks to all who wrote back. I am sorry to know that similar things
>have happened to others, although, in an odd way, it's a comfort to know
>that I'm not the only one out here with these problems. However, I wish
>I was. I wouldn't wish this on anyone. Especially the unsuspecting
>like I was.
>I even looked into support & education groups in various areas where I
>have lived to find out that they seem to be an extremely rare
>commodity... but much needed. I guess, for now, the best place to find
>support groups is on the net... much like this one. One would think
>hospitals would be eager to do support on this type of problem. The
>more informed a person is, the better their chances of healthy outcomes
>from any needed surgical procedures.
>No, I haven't seen a physical therapist about this particular problem. I
>did speak to him about it, with other general questions regarding my
>health, and I just choose to keep looking for the answer to make it
>better.
>I just wrote this to try to make sure that other women knew what they
>may be facing when opting to do this type of surgery. If I had known
>then what I know now, I would have chosen to live with the pain I was
>enduring. I was battling dysplasia when the endo was diagnosed but
>eventually won that battle... although I was informed that it could
>return as cancer. That was part of the reason to allow this surgery.
>However... a good arguement for this is... there is a huge difference
>in quality of life versus quantity. I'm not saying that dying from
>cancer or something that can be cured from hysterectomy is a good
>alternative. What I am saying is that I would have liked to know that
>these things could arise and make the right decision based on my life.
>Anyway, thanks for the replies. I hope your search for health and
>relief goes well. Take care. God Bless and Keep All Of You.
>
>At Sat, 24 Jun 2006, Sasha wrote:
>>
>>I am sorry to hear of your post-hyst problems.
>>
>>Have you looked into a physical therapist that works on women with
>>pelvic issues? I know that sounds odd - at least it did the first time
>>someone mentioned it to me - but there are a FEW physical therapists
>>that help women with your types of issues.
>>Several women in my local support group have seen this type of
>>specialist because a new pain clinic opened up in our area for women and
>>have had pretty good results.
>>
>>Thank you for sharing your story.
>>
>>~ Sasha
>>
>>At Tue, 20 Jun 2006, barefootbabi wrote:
>>>
>>>Just wanted to let women of all ages know to do ALOT of research before
>>>having a hysterectomy for endometriosis.
>>>I tried to do the research before I had mine, at age 32, but couldn't
>>>find anything that deterred me from doing it. I guess you'd have to
>>>know specific things to look for when researching and I didn't know
>>>those things.
>>>I went to see an ob/gyn about having endometriosis which had been
>>>diagnosed years before and was getting increasingly more painful. He
>>>recommended that I have a hysterectomy. I asked not to do a complete
>>>but try to keep at least one ovary. He also recommended, during the
>>>surgery, to do exploratory to make sure that I didn't have a hernia as
>>>well. I asked what differences physically that I would notice, other
>>>than the obvious of not being able to have children and the possible
>>>need for HRT. He told me there would be no difference after the healing
>>>process of approx. 6 weeks. I stressed that I wanted to make sure
>>>because, except during painful times, my husband and I had a very good
>>>sex life and I didn't want to alter that. He told me that it absolutely
>>>would not alter that. In fact, it may make it better because of not
>>>having pain anymore. He did the complete hysterectomy, saying that he,
>>>in good conscience, could not leave the ovaries because of the damage
>>>due to the endometriosis.
>>>I am here to tell you, all of it was a lie to me. I still have pain in
>>>my side from the same location it was in before the surgery. I am numb
>>>from the bikini scar down, including vaginally, so sex is no longer
>>>pleasureable for me and, through alot of talk with my husband, it's much
>>>less pleasureable for him because the surgery left me without vaginal
>>>wall muscle. It's been 3 1/2 years since the surgery and not much has
>>>changed physically to improve it. No amount of kegels will help this.
>>>6 months after the surgery, I realized what the problems were as a
>>>result of the hysterectomy and that I couldn't fix the problems myself.
>>>There are surgeries to help with these problems. A vaginal rejuvination
>>>is approx $5000.00 and can't guarantee success with the numbness from
>>>the scar. There's still no answer to what the pain in my side is since
>>>there was no hernia.
>>>Ladies, do the research... and don't let any doctor tell you there will
>>>be no differences. There will be. And the problem is, most women won't
>>>tell you because they're too embarrassed.
>>>
>>>--
>>>barefootbabi
>>>
>--
>barefootbabi
>
--
Barbara Clowser
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