New to all this and in desperate need of support.........

From: IAS Admin (tracy.joslin@adhesions.org)
Fri Sep 12 21:03:10 2008


From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of Marlene Wheeler Sent: Monday, September 08, 2008 10:30 AM Subject: Re: New to all this and in desperate need of support.........

You've come to the right place. There are a lot of us here who know exactly what your going through. Adhesions are a real problem for a lot of people, and unfortunately there are a lot of Physicians out there that don't believe they cause pain, and treat us like we are drug seekers and or need emotional help. There are people and a lot of good Doctors who know the issues we have, and are there for us. First off where are you? I would look for a good Pain Specialist that understands your situation. I was lucky to find one. And also find a good surgeon who understands and deals with adhesions on a regular basis. They are out there, but you have to do your research. I actually had to take over my self to find someone who would help me. I had an Ob/gyn who was in tuned to my adhesions and knew that they were a problem. He just wasn't the one to take care of them, I found a specialist. The General surgeons here blew me off, and didn't believe that adhesions caused pain. My Gi doc believed me, but really couldn't convince the surgeons. So I ended up In Pa.(from Utah.) with Dr Gerhart. He saved my life. ( he specializes in dealing with adhesions.) (clarkgerhart.com) There are also some surgeons in Fla that apparently are good. And I'm sure they are in other areas across the country. These are just the ones I know about. Good luck and keep in touch if you need to talk. Marlene

> Date: Sun, 7 Sep 2008 20:26:13 -0500
> From: tracy.joslin@adhesions.org
> To: adhesions@mail.obgyn.net
> Subject: New to all this and in desperate need of support.........
>
> Sender: Lilma8@aol.com (ScaredMa)
> Subject: New to all this and in desperate need of support.........
>
> I have had problems with my periods ever since I started when I was 12
> but they got worse after I had a tubal after my last child was born, I
> was 22. I struggled and struggled and was written off by several OBGYN.
> I tried hormones but they didn't work, I ended up in the ER several
> times for pain management and they treated me like a was a drug abuser.
> Finally last year I got referred to a new OBGYN and he took me
> seriously. He tried an IUD but my body rejected it. Since I was done
> with having children we discussed a hysterectomy but first he wanted to
> go in thru the belly button and see what was goin on and do a DNC and
> see if that might help. This was in Nov. 2007 and he found
> endometriosis and my ovary was adhered to my abdominal wall, all that
> was lasered and I had to wait to see if it helped and it didn't. So, I
> was scheduled for a hysterectomy for Jan. 2008. He did a big incision
> and found lots more endometriosis and adhesions but left my ovaries and
> tubes.
>
> I have had problems with ovarian cysts and one burst one time
> but he felt this would work and so the recovery began. The recovery was
> long and hard for me, I really struggled.....I have IBS and my problem
> is severe diahreah(SP?)every time I eat. My bowel movements changed
> after I was off of the pain meds and should of been getting better. 2
> months after my hysterectomy they did a cat scan to see if I had a
> hernia and I didn't so they told me to continue to wait and see but 2
> more months went by and nothing got better in fact it got worse. I
> ended up in the ER and then back to my OBGYN and he scheduled surgery to
> just check things out. When he got in there he had to due a big
> incision due to the density and severity of the adhesions, several loops
> of my bowel were adhered to the abdominal wall and there was adhesions
> and endometriosis all over and a cyst on my right ovary. I started to
> recover but 4 weeks later ended up in the ER due to severe pain and
> nausea and constipation and they found a mass larger than a softball in
> my abdomen. I was admitted and scheduled for surgery and was told they
> thought the mass could be cancerous which thankfully it turned out to be
> benign. They removed the mass which was attached to my bladder, bowel,
> ovary, and abdominal wall. I also had endometriosis removed and they
> took my ovaries and tubes and put in Seprafilm. I am now 2 months out
> from the last surgery and have not gotten better but have gotten worse.
> The OBGYN does not want anything to do with me cause he said all my
> female parts are gone and it is no longer anything he will deal with, I
> get that but he just kinda left me high and dry..........I was referred
> to a urologist due to severe bladder pain when my bladder empties and
> they tested for infections and the urologist scoped my bladder and said
> it wasn't spasms but it was probably adhesions but he wouldn't touch me,
> he would be glad to assist but not take the lead......I then ended up
> back in the ER 2 more times but nothing showed up on the cat scans or x
> rays but my stomach started to swell up to look like I was about 7-8
> months pregnant and I was referred to a general surgeon. I went to the
> general surgeon who quickly dismissed all of my surgeries and told me
> there was no proof of pain and that I needed a pychological evaluation.
> I left in tears and was in shock. I ended up throwing up all day and
> night.
>
> He referred me to a gastroentologist and they have run tests and
> found nothing. I am still in pain, I still swell up after eating, even
> very small amounts. I am constantly nauseated, my bladder still hurts
> so I was referred to a pain management doctor, who just tried a nerve
> block yesterday, but it will be 24-48 hours before I will know if it
> works. I about lost my mind thinkin I was just crazy due to how I have
> been treated over this. I due have anxiety issues and depression but I
> have been in treatment for those for several years now. My therapist
> does not think this is a mental problem. I didn't even know about ARD
> until about 1 day ago. After alot of digging on the internet about IBS
> which they are blaming most of this on and I never had this kind of
> trouble with my IBS until after the hysterectomy. I finally found some
> links and found out that I wasn't a freak and it wasn't all in my head
> and I don't feel alone anymore. I haven't been struggling as long as
> some but this past year has been hell and I can only imagine how much
> hell it has been for others who have been goin thru all this for years
> now.
>
> I am exhausted and frustrated, I am suffering and pretty much have
> been told that until my adhesions become life threatening due to a bowel
> obstruction, no one can help me. They did put Seprafilm inside me this
> last time but I didn't even get told what exactly it was and so after
> research, finally got info and the OBGYN has told me it works, period
> and that his gut tells him it can't be adhesions due to the Seprafilm
> but that is not what I have learned thru searching on the web. Can
> anyone offer me some support or advice.....I have nearly lost my mind, I
> can't sleep or eat or use the restroom without pain and swelling and
> emotional distress.........I just don't know how much more I can
> take......I am just enduring at this point and I don't have much left to
> give to enduring........I was filled with hope when I found out I wasn't
> alone...........
>


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