Re: Endometriosis & Hysterectomies
From: Angie (anonymous@obgyn.net)
Fri Jun 30 14:59:13 2006
About a year and a half ago I had a leep from severe dysplasia and the
doc didn't say any thing to me about it coming back. I had to have a
pap every 6 mon for 2 yrs. after it to make sure they got it all, but
not that it would continue to be a problem.
At Thu, 29 Jun 2006, Barbara wrote:
>
>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
>
--
Personally I'm always ready to learn, although I do not always like being taught.
<br>-Sir Winston Churchill
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