Re: Anyone got any positive stories to tell????
From: Karen (anonymous@obgyn.net)
Thu Aug 3 02:16:30 2006
Hi Dena,
The bioidentical progesterone cream that I am using is from a compouding
pharmacy. I need a prescription from my Dr's in order to receive it.
No there is no estrogen in this cream only bioidentical progesterone
which
resembles as close as possible what the human body produces. When I
first started on the cream I was using 100 mg per day at bedtime. It
puts you to sleep for the whole night, which is important when you are
suffering with pain. Now that I am on the suppositories I am using
200mg per day (1 each night at bedtime). I looked up the brands that
you are using & as far as I can tell 1 pump is 20mg. That may be why
you are not getting the results that I have had. I am taking 10 times
the amount that you are. I did have my hormone levels checked recently
thru a salvia test & the results were that my progesterone levels were
low.
To find a compouding pharmacy near you go to http://www.iacprx.org or they have
a toll free # 1-800-927-4227 24 hours a day, 7 days a week. I had
called my compounding pharmacy to find out in a round about way which Dr
I could go to to get a prescription for bioidentical progesterone. Some
Dr's do not support this. I now have a female Dr that supports it 100%
& also is using bioidentical progesterone herself.
When I started on the cream @ 100mg a day, my body did have some side
effects such as hot flashes, so I had cut my dosage down & I slowly
increased it to 100mg. When I started on the suppositories I was way to
sleepy in the day so I cut them in half & I am now up to 200mg a day &
doing great.
If you have any more questions let me know.
--
Karen
At Wed, 2 Aug 2006, Dena wrote:
>
>Hi Karen,
>
>It was so nice to read your story. Coming from such severe endo and the
>problems it's caused you to feeling so well today, and not having had
>the hyterectomy.... That's just wonderful! I'm so happy for you! We
>need these positive stories to keep us going!
>
>I also use progesterone cream (Life-Flo, Progestacare). At first I
>thought it was the answer for me, but now, although I still use it and
>it does help, it's not keeping me from the pain, doctors, new
>medications, and talk of surgery.
>
>I just had a question... what cream do you use? Over the years of being
>on this forum I've read other ladies posts that suggest staying away
>from the "bio-identical" progesterone cream and sticking only with the
>natural cream. It's obviously working for you and that's great! But, I
>had been told it contains estrogens and such that irritate the endo as
>well. Could you shed any light on that for me so that maybe I am a
>little more informed and not sharing incorrect information with others?
>
>Thank you Karen.
>
>At Wed, 2 Aug 2006, Karen wrote:
>>
>>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
>>
>--
>Dena
>
--
You wrote that you have tried many treatments but you did not mention
bio identical progesterone. I too have been told many times to have a H.
I have had a colon resection because of endo. That is when they discovered I
have endo. I was on bio identical progesterone cream for three years but I
still had burning in my colon. I have been on bio identical progesterone
supositories for 10 weeks with no break & am endo symptom free.I have
no more burning in my colon, no pain, have energy, no more severe depression.
It was my choice to try bio identical progesterone while I was on a waiting
list for a complete H. When my date came up 3 years ago, I cancelled. Look into
finding a compounding pharmacy in your area & see if it is available. Have
you read any of Dr john Lee's books on Progesterone? Hope this helps.
Karen
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