Re: ABIGAIL COMPARING PAIN
From: Jessica (anonymous@obgyn.net)
Sun Jul 24 02:38:37 2005
Abigail ,
How I feel about the future is a hard question to answer. At 17 I was
still hopefull. Not knowing much about endo back then, I had hope that
the dr.s knew what they were doing and would help me find something to
control the endo. But now at 19 I have been through so much(almost
every treatment available) and tossed around from dr. to dr, to only be
told by my own Obgyn that I had 2 surgeries, 2 epidurals,2 shots of
Lupron, and Painfull Physical Therapy all for narcotics very much
diminished that hope. Its a daily struggle. My new Internest having me
fill out a deppression quiz(which I took very seriously and looked at
every question seperatly) He just added up the numbers and diagnosed me
as deppressed. My mom said to him
"I would be kind of worried about Jessica if she wasnt somewhat
deppressed, anyone in pain especially at her age who has a disease with
no cure should be somewhat deppressed."
He replied with "What comes first the chicken or the egg"
Basically telling me my deppression wasnt from my endo experience. This
made me furious and made me think twice. After being on this site and
talking to the women and getting a ref for a very special Dr. I have
some hope. Hope for today that is. But tommorow, I can't answer that.
I've had hope in the past and I've been let down. I try expaining to my
mom when she tells me I have reason to hope, I tell her that I don't get
my hopes up anymore. I take one day at a time. I don't want to be let
down so I don't allow myslef to beleieve I will get better. I don't
know how your daughter feels about her situation, but I do think you
should ask her. I don't believe that my mom will ever fully understand
how I feel. I do appreciate her trying to, and talking to me about it
when I don't feel I can burden her with anymore. Women with this
disease need as much support as they can get, even if they are not able
to reach out and ask. After two years I feel like a burden on everyone
so I tend to just shut down most the time and don't let them see how
much I'm really going through. This is why I say ask your daughter. I
know it hurts to hear the truth, but she needs to tell someone. No one
can keep things bottled up inside. I think with a mom like you she
won't have trouble turning to you and talking about her future as long
as she knows your willing to listen and that you have hope for her
future even if she doesn't. My moms always telling me its going to get
better and I should have hope. Even though I can't beleieve it right
now, it feels good to hear. Maybe you should introduce your daughter to
this site. Its a good support system. I also found going to a pelvic
pain therapy session with other women who had endo and just talking
about problems and solutions helped. You could probably find one in
your area, and even go with your daughter if she needed. One more thing
you might want to discuss with your daughter is having kids some day.
This was a big dissapointment when my Dr. told me I was less likley to
concieve then women without endo. I don't want kids anytime soon, but
Its hard when you hear you might now be able to have your own. If your
daughter ever feels like talking to a girl around her age, whos been
through something so similar she can feel free to e-mail me. I know
hearing stories from women that were so young when they realised they
had endo makes me feel not so alone. If you do talk to your daughter
let me know how it goes. I would like to know how other mothers and
daughters deal with endo. Again you or your daugher can feel free to
e-mail me at fireinthesky419@msn.com I hope your daughter can find
optomism in all of this, and I know this is very very difficult on you.
Stay strong.
--
Jessica
At Sat, 23 Jul 2005, Abigail wrote:
>
>The stories are quite similar. She is 18 diagnosed at 16. Luckily it
>was an quick diagnosis. A lap & removal did not relieve the pain, but
>as I just learned from this thread, It has to be cut out, & yes, My OB
>did laser it out. I have been reading, excise, excise, & I just assumed
>with a laser.
>Well we went to pelvicpain.org, found Dr. Harmon in Morgantown, WV He
>is very caring. Talked of a lot of options, He is the one that
>recommended Danazol vaginal suppository. It works topically, not
>getting into blood stream, it is new To find info google "Janicki
>danazol" He is out of Cleveland.
>I would recommend PelvicPain.org
>Some of the reasons we have been in denial, was the sudden onset of
>pain, also the lap didn't help, but that has been cleared up. And
>finally, she had a lump pop out, where a hernia would be, but they said,
>nope, no hernia.
>It's time we believe.
>Finally, how do you feel about the future, Jessica?
>That is a question I can't ask her. But it breaks my heart for all of
>you out there.
>Take care, Abigail
>
>At Fri, 22 Jul 2005, Jessica wrote:
>>
>>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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