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Old 05-12-2013, 04:37 AM   #1
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HopefulDoll HB User
Has anything 'cured' your endometriosis? What should I do?

I had stage 4 endo last year and after two laps was told it's now stage 2. It was discovered when I went in to have a cyst on my ovary removed. I also have adhesions and fibroids.

I tried Mirena- didn't suit. I ended up with another cyst caused by the Mirena and weight gain!

In January I started 3 months of Decapeptyl injections which put me into temporary menopause overnight. I had bad sweats and headaches for the 3 months but absolutely NO PAIN for the first time in years. Even with the menopausal side-effects, I would stay on these injections for life, except that you can only have them for 6 months in total. It is now 2 months since my last injection and the endo pain is starting to come back again.

So my next step is to choose whether to go back on the injections for another 3 months, although the pain would probably return again after finishing them.The only advantage is that if I had to have a hysterectomy it would make the surgery easier because ovaries etc. would be smaller.

My other option is to take tablets called Primolut which I haven't heard anything about. Does anyone here know of them?

Please help me to decide what to do as I have to make a decision in the next few weeks. I would really appreciate your input.

 
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Old 05-25-2013, 10:14 PM   #2
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nicole639 HB User
Re: Has anything 'cured' your endometriosis? What should I do?

Hi there,

Well, my friend, I'm afraid only you can know what is best for you to do in terms of your health. I haven't heard of primolut but I did look it up online and it's a drug used to treat endo and other menstrual irregularities, it's a synthetic hormone. And of course has a host of side effects, but all meds do. I'm not familiar with its effectiveness at all so I would encourage you to look it up online and do some digging around and see what comes up there as well.

My doc mentioned the injections to me as well and so far my lapo from last spring is holding off the pain so I haven't started them as of yet. He also mentioned that not long ago women did stay on those injections for life and many of them did just fine - but there were risks involved in doing so which is why it's no longer indicated for long term use.

It's hard to know what the best course of action is, especially with a condition such as endo where everyone presents a little differently and the symptoms vary so much. I have been looking into a doc in Chicago that only deals with endo and has great results with doing lapos and getting all of the lesions, which not many docs are able to do. So perhaps it's worth looking into other docs who specialize in endo and have great results with certain treatments that other regular docs don't. There's a lot of promising info and results out there to be had.

Breathe Well,
Nicole

 
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Old 05-30-2013, 07:07 AM   #3
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50176702 HB User
Re: Has anything 'cured' your endometriosis? What should I do?

I think you should try to do more exercises e.g. swimming. I have a 5 cm chocolate cyst but since I swim every week, I don't have ANY pain at all. It's not unitl I had my regular check up that I knew the cyst has grown from 2 cm to the present size of 5 cm.

 
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Old 06-10-2013, 05:54 AM   #4
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talkingtoclouds HB User
Re: Has anything 'cured' your endometriosis? What should I do?

What really worked for me was to find an endometriosis specialist. I really got the most relief from an excision surgery performed by one of the most renowned endo specialists in the Midwest. Research "endometriosis specialist" and see if you can find one in your area. I traveled three hours out of my way to see one, and it was well worth the trips. He was able to eliminate all the visible endo from my pelvis, bowel, and bladder and I have felt so much better since. I don't know if it has come back because my symptoms are basically minimal unless I'm on my period.

Have you considered regular hormonal birth control on a continuous cycle to treat your endo? I'm on Nuvaring continuously and it really works well to keep my symptoms at bay. There is the risk of breakthrough bleeding or bleeding more for the first few months, as I've heard some women experience this, but for me, I just stopped having periods all together.

 
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Old 06-17-2013, 07:16 PM   #5
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Join Date: Jun 2013
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jred HB User
Re: Has anything 'cured' your endometriosis? What should I do?

About 4 years ago I read the Suzanne Somers books (the actress) I always suspected that endo is caused by the body making too much estrogen. Anyhow I wasted time and $ visiting some endocrinologists around me.
I finally found a bio-identical hormone doctor. Within 2-3 months my endo was MUCH better. I use a daily progesterone cream and testosterone one too.
The only problem is this doctor is not covered by insurance so I have to pay out of pocket for the Saliva and blood tests plus the visits.
I am looking for someone cheaper.
It is def. worth a try. My periods are much lighter and I have more energy.
I also take Armour Thyroid.
I have had tons of laps, too many -the last surgeon said I could be in real danger with any more and that it "was a mess in there" Nothing ever helped until the hormones. I did lupron -what a nightmare.
I so wish I had found this 20 years ago, my whole life would have been different. When I think of all the endless days writhing in agony with my period, it makes me furious that no one is researching this. I have tried to share on FB with an endo group but no ones seems too interested.

 
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