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

From: ScaredMa (Lilma8@aol.com)
Sun Sep 7 20:07:53 2008


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............


Enter keywords:
Returns per screen: Require all keywords: