Severe endometriosis :(

[survivor445]

Has anyone tries an IUD to replace hormone pills? I'm on progesterone and would like to get off of it because its causing horrible side effects--I don't even feel like "me" anymore. Has an IUD helped you in any way?

[ticked]

PID is so excruciating I can't even express to you how painful. I was given the meds to take and I was in so much pain I threw them up in a parking lot and put them back in my mouth. I was out of it and I should have been sent to the hospital and put on an IV but my doctor was clueless. ARGH.

I am somewhat pain free and plan to come off the pill to see if the pain is still there.

Dr.Redwine is an amazing retired surgeon and he says no matter what hormone you are on it will not STOP Endometriosis from growing so there is no point messing with your hormones that way.

I suggest excision to remove all the Endo and leave it at that. I take the pill every day now so I don't get a period because I don't want a period again and because I am not looking to have anymore children. I would love to come off it all together.

Where do you live and I will try to help you find a good surgeon. I will ask around. Mine was done in Toronto Canada.

Thanks Silverfox I do feel a lot better these days. My next battles I am to conquer is scar tissue but I am doing body rolling and that is helping.  

[survivor445]

How did you know you had PID? Was it really painful? My biggest goal is to get off of this progesterone because it's causing so many side effects, but what else is there that I can go on that won't have those side effects, AND will stop my periods? (I can't get a period at all. Doctor says it's bad for endo)  Thank you..I hope I find pain relief as well and can finally feel like I'm 22 years old instead of 52.

[silverfox67]

Oh my!  Girls, I truly feel for you... I thought PID and HPV was bad!  I went through three colposcopies and thought I'd die on the table!!  I had one D&C and then the hysterectomy.   You are truly suffering so much more!  I  hope that you Survivor, find the relief that Ticked did.  Good health to you both!

[survivor445]

Wow that's crazy and amazing he got it all for you. Are you pain free now? What surgeon  is this?

[survivor445]

Yeah..that's true. But at the same time it was literally in my organs like in my bladder..intestines..uterus and he didn't want to risk me having bladder problems for the rest of my life. I would like to have another surgery to get the extra endometriosis out.

[ticked]

If the surgeon didn't get all of the Endometriosis out then you will eventually have to have another surgery. A good surgeon that knows this disease knows how to excise all the endo leaving none behind.

[survivor445]

hmm--IUD's don't sound to safe.Now I know why my doctor suggested not to get that.  I DO want to have a baby someday. It was always my dream to have a family of my own. I tried "Endovan" It's a pill that you take--three capsuls twise a day for 2 weeks, then two capsules once a day and it's suppose to shrink the endometriosis by the urinary system. It's like a "cure." It works for some women, but did not work for me. :( I had more bloat and felt more fatique then usual.

[survivor445]

Thank you for your information--it was very helpful!! I feel like I'm getting somewhere now :) I have looked Sepia up now and It sounds really great! Great for a lot of things. I printed the page out so I can go over it with my doctor. Do you think Sepia will stop my periods though?

[silverfox67]

By the way, Sepia can safely be taken with the birth control pill of your choice.

[silverfox67]

There was/is a post on here from a young woman whose Mirena is falling out.  think twice about the IUD.  Also the O ring I hear can cause permanent sterility.  Those D&Cs and other "surgeries" are so painful!!  I'm so sorry you've had to go through such pain!  - The IUD itself caused a PID and many women sued Dikon over the Dikon shield.  The Lippes loop didn't fare too much better.  That was a long time ago, but the IUDs are still IUDs.  Whether they cause abortion by not permitting the ovum to attach itself to the wall of the uterus or it contains something to destroy the ovum, doesn't make any difference.  It is still a foreign body that can cause much damage to the uterus.  - I had horrible cramps and very long and profuse periods with the IUD.  (9 days).  - It works great for some women and causes problems for others.  Think carefully before deciding on an IUD.  There are other birth control pills on the market now.  Safer and better than when I was young.

[survivor445]

That is horrible you had to go through that! I do agree that doctors put us on these pills for correction of hormones and they don't try to treat it with herbal medicine--they just drug us up. I feel like I'm putting poison in my body everyday just to help the endometriosis. Is Sepia a pill form? Did you try it? How did it make you feel? Did it stop the bleeding?
IUD caused PID? :(  Maybe they didn't put it in right, or was the endometriosis causing harm to it?
Well good luck with everything. I'm going to do some research on Sepia now. Thank you!

[survivor445]

I heard alot of good/bad things about different hormone pills also--I guess you have to choose the one that works for you.  
This is not my 1st surgery--I actually had two more. One back in 2009. The second one was in 2010 I believe my last one was in 2011 and my endo specialist said that he can't go any farther because there's way to much endometriosis on my organs. He got out as much as he could though.
I have tried many different birth control pills (I believe about 8 different types) and none has helped. Some made me loose weight and help acne, but they didn't stop the bleeding (I bled for 3 months straight and had severe amounts of pain where I was in bed days and days)
Finally my doctor put me on progesterone and like you said, I had the same side effects (hair loss; weight gain; mood swings; depression; and suicidal thoughts) I would LOVE to get off of this!! I was 105 pounds a year ago and now I am 124. What happened to my body?!! :(  So your doctors suggested you to not go on any IUDs?  I hope my doctor says to give it a try and if it doens't work we can take it out.

[silverfox67]

The problem with progesterone is that the female body makes estradiol and progesterone both and the doctors try to treat us with only one hormone.  For sure don't take Premarin (pregnant mare's urine).  We are not horses and it is not natural for humans.  Sepia is a much better choice - it corrects our hormones without side effects.  However, it is not birth control.  -  i had an IUD many years ago and should have sued - but I didn't.  I ended up with a PID and had to have a hysterectomy.  :(

[ticked]

I was diagnosed with stage IV Endometriosis in 2007 and I was put on Lupron right after my surgery. I have heard lots of good and bad about all types of hormones. I had PID prior and was not allowed to take Mirena.

I can't speak from anything but experience and research and listening to other Endo sisters that have gone through the same things.

I prefer the continuous BCP for one, I dont get a period, I don't get the cramping because I don't get a period, I don't get PMS symptoms, pimples and my moods are stabilized.

I had resent surgery because of scar tissue causing a bowel obstruction and there was only superficial Endometriosis there.

Was this your first surgery?  Did they do excision or laser?  The reason I ask is because Excision is the best method.

When speaking to Dr.Redwine who is a retired Endo specialist he said no matter what hormones you go on it will not stop the growth period. So that made me think about even being on the pill. I do not want to get pregnant or get pelvic pain so I think I will stay on it as long as possible.

I was on visanne with is progesterone only and it made me suicidal. Lupron brought me into a huge depression along with joint and muscle pain and that was with the add back therapy.

Some people rave about one or the other or say how terrible it was, the best thing would be to try different ones to see what works best for you.