Re: Anyone got any positive stories to tell????
From: Karen (anonymous@obgyn.net)
Wed Aug 2 02:25:46 2006
Hi
In answer to any positive stories, I have to write mine. I am new to
this website & am shocked at the stories women write. I was diagnosed
at 42 with severe endo. I was bleeding rectally every month when I
menstruated. I was also suffering with diarrhea every day unless I took
imodium to control it. They found that I needed to have a colon
resection to remove 1 foot of my colon. When they opened me up they
thought that I was full of cancer everywhere. Lucky me, it was only
endo & yes it went thru my colon. No wonder why every month I would die
in excruciating pain in the bathroom with pouring diarrhea mixed with
blood. Yes, my whole life when I went to the doctor's complaining of
painful periods I was told some women have a harder time than others.
They did not remove any of the endo because everything was glued
together & it was too severe. Anyway I was told the cure would be
lupron or deepo provera or a complete H. One year later after doing
nothing, my endo had decided that it would knock me down so badly with
pain that I could not go to work. I was bed ridden with pain that would
not go away. I was on a waiting list for a H & no one could help me. I
started taking bio identical progesterone cream, after 3 weeks I started
to have energy again, no more pain & felt great. When my surgery date
came up, I cancelled. That was 2 years ago. I have now switched over
to bio identical progesterone suppositories for the last couple of
months & it has totally quieted down the endo. It may not be a cure for
every one but it has totally been the answer for myself considering how
I was suffering without it. I also started Bikram Yoga after my colon
resection 3 years ago. I find that when I am going to this at least 3
times a week, it quiets down my endo. I hope more women try using bio
identical progesterone as an alternative treatment. Has any one else
had such great relief as I have with bio identical progesterone?
--
Karen
At Sun, 30 Jul 2006, anonymous@obgyn.net wrote:
>
>Hi Everyone~
>
>I have to stepped away for a bit but not because it was sad or
>overwhelming I just have been very sick and running between hospitals
>and doctors latley. I do know what you mean though about positive
>stories. I can see we all need this forum and others in different
>stages. It's almost like going to those local support groups for endo
>sufferers and they too can get caught up in all the downside and not the
>upside. Sometimes you may not want to go back. As most of us know
>there is a low success rate on those who can actually walk away without
>a reocurrance of this disease. Sad but true. What I get out the post
>here are a litte bit of both. I think in the end we just always end up
>searching around and come back for more information (or hope there is
>more) and leave again. I don't look at it as a bad thing though. If we
>all remember that when we were depressed and didn't have someplace to go
>there were strong women who had more experience than we did at the time
>and they took the time to help us. This is my reason for coming back.
>Honestly, I don't expect solutions when I come here, but if I see
>something new you bet I will grab onto that new information and store it
>as we never know what is in store next for any of us.
>
>I recently had someone tell me that getting disability was impossible.
>Well, that was their negative spin on things. I said..well..it does
>take a lot of work and perserverance and I am not one to sit by and just
>be a victim of circumstance. So I made it happen for me and my family.
>So I hope for you that these kinds of people don't continue to suck the
>hope out of you. I hope you have some of your experiences to offer back
>as well. Once you have platued off, maybe finding that particular sight
>that is specific to your current status may be the best alternative to
>staying positive and hopeful. It's hard enough to be sick but we all
>must keep moving forward. I agree with the statement "the amount of
>suffering we go through is in our control" but I also agree this can
>only be true if we have really shown someone else the way. I agree with
>both sides of this topic.
>
>Have a great rest of your weekend everyone! May we all keep sharing
>every part of ourselves and any great news of hope that we receive to
>enlighten others :)
>
>Elisa
>
>At Sun, 30 Jul 2006, Jenny wrote:
>>
>>Louise, I'm with you; it is depressing. I used to post here a lot when
>>I was first diagnosed. It did help, but now I am getting overwhelmed by
>>all the sad stories. They need to be told and get out of our systems,
>>but it is very overwhelming to me. My empathetic side goes into
>>overdrive and I get stressed more, which isn't good for endo.
>>
>>I now divide my time up between looking at this forum and looking at
>>positive info from other websites. I like to read articles about what
>>research is being done, advice on how people with chronic pain deal with
>>it, and reading books about improving my symptoms. Not much is known
>>about endo, but I feel a rush of relief when I hear that there are
>>scientists that devote their careers to solving this problem.
>>
>>Here's my good news: acupuncture is helping me. Not everyone is helped
>>by this, but luckily I am one of them. I have tried bc pills, the IUD,
>>2 surgeries, and so far acupuncture has made the biggest difference in
>>my life. Another thing that is helping me is counseling. Also I highly
>>recommend "Turning Suffering Inside out" by Darlene Cohen. It is about
>>how pain is eventually inevitable for every single one of us, physical
>>or otherwise, but the amount of suffering we go through is in our
>>control.
>>
>>Keep up your positive attitude and just balance out the bad news from
>>here with hopeful news from other places like online articles, books
>>(look on Amazon), and endo magazine (online). Maybe something new will
>>interest you and help you, like acupuncture did for me. Maybe you'll
>>try yoga or biofeedback or whatever it is that will help you.
>>
>>Good Luck! ~ Jenny
>>
>>P.S. Hela, what made you feel better?
>>
>>At Sat, 29 Jul 2006, Hela wrote:
>>>
>>>Hi Louise,
>>>
>>>I used to post on this site a lot in past, as I was desperate for
>>>support and information. I got so much better that I do not have a need
>>>to go here anymore really.. Just dropped line about some research news
>>>the other day (so if I have some news that apply to others, I like to
>>>pass it on)..
>>>I have no idea what worked for me, as I tried so many things! I am very
>>>active now (that helps too!) starting studying again while working full
>>>time, keeping myself full-on busy!
>>>I saw an interview with an endometriosis sufferer on the lunch news one
>>>day, she climbed some mountain (dont know where it was now) to raise
>>>awareness.. There is definitelly a lot change going on at least here in
>>>the uk!! When I told my boss I have endometriosis, she knew what it is
>>>and was very sympathetic! And I from my own experience can say: There is
>>>definitelly a good chance of getting endo under the control!!
>>>
>>>Hope you feel better soon
>>>
>>>take care
>>>
>>>H. xx
>>>
>>>At Thu, 27 Jul 2006, Louise wrote:
>>>>
>>>>It seems that all the stories on here are negative and they depress me
>>>>so much. As im sure 99 if not 100% of you are endometriosis sufferers
>>>>like me, you can relate to how down you become and how iscolated you
>>>>start to feel, especially when you are in an environment where everyone
>>>>just looks at you like youre being stupid when youre doubled up with
>>>>labour type pains, like at work or just in a shop. They just do not
>>>>have a clue. They think youve just got "tummy ache". Why do we and why
>>>>SHOULD we have to put up with this day in day out, year after year? im
>>>>25 and have had this godforsaken disease for 10 years and it feels like
>>>>a lifetime. I feel robbed of the last 10 years of life and fun. Ive
>>>>been through child labour and endo pain comes very close indeed to that.
>>>>With the technology out nowadays and with the amount of women suffering
>>>>out there, i just cannot understand why nothing is being done to help
>>>>us. Please can someone fill me with some hope as i just cannot take
>>>>much more. I go in for my 7th laparoscopy next week to have it all cut
>>>>away AGAIN, but i hold no hope in it not returning as i know that as
>>>>long as i have ovaries it will keep coming back. I think im just
>>>>looking for someone to talk to because i feel so low sometimes talking
>>>>to family and friends because although i know they care and "try" to
>>>>understand, they really dont. Help
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