ENDO Messages for July, 2005: Re: ABIGAIL COMPARING PAIN

Re: ABIGAIL COMPARING PAIN

From: Jessica (anonymous@obgyn.net)
Fri Jul 22 20:17:58 2005

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Abigail, I was wondering how old your daughter is and I would like to tell you a little about my case because it sounds like your daughter and I are in the same boat. This might be long, Feel free to scim over it.

I'am 19 and was diagnosed at 17. I always had painfull periods since I was 12 but thought it was just hereditary since my mom, aunt and sister also had. Around 17 yrs old I started having cramping and unusual pelvic pain. It felt like I was on the worst and heavist day of my period all the time. When the pain became chronic I contacted my Dr. That is when I learned about endo. I had my first Lap July 22nd 2004. This did not help pain wise. ^ small endo adhesions were spotted and removed. At the time I didn't know how little the Dr. who preformed my surgery knew about endo. I found this out after surgery. He did however tell me that the amount of endo has little to do with the amount of pain. I had a slight case at the time(or so he said) and it was understandable that I could be in excruciating pain. I had my first shot of Lupron July 30th. Two weeks later I experienced aching in my leg bones. My Dr. reassured me this was not from Lupron so I had another shot thinking it would go away. The Pelvic pain was still there daily, but on top of that I had life altering leg pain. I then switched insurance and dr.s I was sent to a pin clinic. They had me up and down on Methadone which seemed to help the pain, but was later taken off because they thought I was too young. Who is too young to be in pain? I also recieved to steriod epidurals which did little to help. I have been on anti- depp, and seizure medications to halp lessen the pain which they did not. I had Pelvic physical therapy because I couldnt pee because the pain was so intense and ended up with a cathurter for a week, and my urethra was dilated. I couldnt stop bleeding for several months while I was on Continuos BC, so had to do a D&C. This did nothing for the pain only got rid of the bleeding. I have also had several Ct's and MrI's due to a painfull area on the right side of my pelvic. These came back negative.

I feel like I've been through every treatment possible with no results. I was reffered to a Dr. near home (I was going to go out to California from Minnesota) I am now realising how important it is to see a ENDo SPECIALIST. A reg OBGYN DOES NOT CUT IT.

What your daughter is going through is completley normal. Chronic Pain with Endo is the only pain I've ever had. For 2 1/2 yrs its been the same everyday. I would do a lot of research on an endo specialist near you. Get second and third opinions. Make sure her pain is treated and managed. MY mom faought tooth and nail for me. I cryed everyday and continue to do so. My current OBGYN refuses to treat my pain, and really doesnt know much about endo. My mom had to result in getting pain medication online for the days were I just can't bear it. No one wants to be on pain medication, but no wan deserves to be in pain.

All I can say is that your daughter is not alone and neither are you. You sound like a wonderful, concerned mother. I know that I count on my mom to be my support system. If I didnt have her I don't know what I would be donig. My moral is so down from my endo, and my pelvic pain being dismissed by all my Dr.s that she now has to talk to them for me. I have great hope for this new Dr. I see in August. Just continue what you are doing. Be there for her. You might have to be her voice when she just cant get the words out. Good luck finding a solution. Oh one more word of advice. I don't know how old your giel is, But if A dr.s only solution is to have a baby then you need to find a new dr. Read up on all the latest methods for endo removal, and research as many dr.s as you can. Good luck, I hope your daughter si succesfull in having a pain free life emotionally and physically. Let me know how she is progressing. Feel free to E-mail me at Fireinthesky419@msn.com if you have any questions or just want to talk. I would also check out Pelvicpain.com its a great site. Jessica

At Fri, 22 Jul 2005, Abigail wrote: >
>My daughter was diagnosed with endo fairly quickly. We have tried a few
>things.
>But.... I was wondering..
>Her pain came on in Sept 2003. It came on hard & every day. There was
>no starting with pain during her period, & building up to everyday. It
>was everyday from the git go.
>She had a lap...One dot of endo & 4 adhesions...No pain relief.
>She depo-provera 6 months... no pain relief.
>She did have something (hernia like) pop out & go back in ...Diagnosed
>as no hernia. CT.. no hernia
>
>Does this sound like anyone else's endo? Pain every day from the
>beginning?
>Thank you, for your time.
>Abigail

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