posted
I just had surgery to remove my gallbladder. While they were in there they decided to "check out" a persistant ovarian cyst that causes me pain.
The cyst turning out to be severe endometriosis. I meet the with Dr. next week, but in a nutshell, she wants to put me in menopause using a drug called Lepron.
Everything I've read about Lepron sounds scary - the side effects sound like Lyme symptoms- and God knows I don't need more of those! I want to try natural progesterone but the Dr. seems dead set against it.
Has anyone had any experience with Lyme treatment + Lepron for endometriosis at the same time? Does Lyme contribute to endometriosis? Does anyone have any experience using natural progesterone to treat endometriosis?
Posts: 237 | From WV | Registered: Mar 2007
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daise
Unregistered
posted
MotownLyme--Hi!
Endometriosis can happen with PCOS (Polycystic Ovarian Syndrome.) Please see my current topic post on the medical forum. Look for "PCOS and Lyme disease."
I'm not saying you have PCOS, but ... it's common.
posted
i've had lyme/endometriosis for 30+ years when i had my hysterectomy due to large polyps; can't think right now if that is correct name for just inside vagina! darn lyme!
i never had treatment for any of this. just suffered thru it.
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Oddly, I had endometriosis and ended up with a partial hysterectomy but didn't need the hormone replacement drugs since I kept my ovaries.
But from there, it was surgery after surgery from galbladder removed to tonsils removed, appendix and it got to the point that I said nothing was left to take out without severe consequences.
Every surgery, I would have "complications" and be stuck in the hospital longer than anyone should be with that particular type of surgery, but I just went through life thinking I'm just not a lucky person.
Other than all the surgeries, I was thinking I'm basically healthy, until I got his with the horrid chest pains. Had the heart catherization and pain just got worse and worse...but NOW I wonder if all those surgeries, including the endomedtriosis were actually signs of lyme before I had any clue at all?
Yes, I know I was really sick for five years with something "undiagnosed" but before that, they just kept removing organs.
I guess I'm mentioning all this because it leaves questions in my mind as to how much of these other things are actually lyme related. And would I avoided all these surgeries if it had been treated way back then?
Obviously I can't turn back time and get any of the organs back and can only look forward, but I guess I'd ask you motownlyme if you have asked your LLMD his/her opinion on this other drug they want you to be on.
This all gets so complicated and hopefully you can find something that works for your body since all of us seem to be able to tolerate different meds and others have nightmare stories with them.
Good luck and let us know what you find out.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
HI! How old are you? Gonna have anymore kids? if not...SKIP LUPRON, GET SPAYED! OMG! if I knew then what I know now I could have avoided 2 major surgeries 5 months off work, losts of pain, including chest. not saying you would have exact same, I read up on Lupron and decided to take a chance. the worst thing is the shot stays in your system for like 10 weeks, so if it causes you problems....nuff said huh? Okay , help me down off my soap box will you?
Good luck whatever you choose, Lorraine
Posts: 16 | From Kentucky, USA | Registered: Nov 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi,
Endometriosis is horrible - I'm so sorry you have to deal with it.
I was on Depot Lupron for 6 months in '99 - 2000. It was not the answer for me.
That is not to say it would be as bad for you, I don't know, but please be cautious and do your research. I was not diagnosed yet, but did have Lyme and co's, and that certainly had an impact.
It is a monthly injection, right? Puts you into menopause? Just want to make sure we're talking about the same drug since our spelling is slightly different.
Prior to trying Lupron, I'd had 2 laparoscopies with excision (laser as well - generally not as effective, I think), and had tried various treatments - continuous birth control, creams, alternative, etc. Everything seemed to work for a period of a few months and then stop. The pain was excruciating.
Lupron was a nightmare of side effects, with very little pain relief. The weeks before and after the shot were painful, with 2 fairly decent weeks in the middle. Double vision, nausea, vomiting, dizziness, vertigo, mood swings, muscle pain, and the list goes on.
Within one month of stopping the Lupron, I was in the ER with bleeding and horrendous pain. After that, was basically bedridden from pain for the next 5 months. Had one more surgery, then opted for a hysterectomy - actually, begged for one, because I was in my 20s and moving cross country within the month. Knew a brand new doc would never do it.
After Lupron and the ensuing surgeries, my health took a major downturn. I can't say whether the Lupron or the surgeries caused the downhill slide, they both probably played into it, but it might have happened anyway.
If your instinct is telling you to try another treatment route before Lupron, I'd go for it. You have nothing to lose by exhausting every option, and it would make sense to go for the more "benign" options first.
You are more than welcome to pm me and I will share what I've tried and my experiences. There aren't any easy answers, and hysterectomy is not an answer either. I still have problems and deal with endo.
Did you know that endo has been linked to chronic infections in recent research? Huge news!
I hope you find relief. Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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tailz
Unregistered
posted
I'm sure I had Lyme at the same time I had endometriosis. The first doctor I saw wanted to induce menopause to treat the endo (not sure which drug - I forget), but I asked around and researched it myself.
It just so happened that a woman who I worked with had a daughter with endo who had taken some drug to 'cure' her endo with artificially-induced menopause, and her words to me, "Oh my God! Don't do it!"
Apparently her daughter became severely depressed, anxious, even suicidal at times, and she was even younger than I was.
I'm not sure the alternative 'cure' for endometriosis was any better - they gutted me instead and took my uterus and left ovary. I've very rarely have pelvic pain of any type since, but I regret that I allowed them to do this to me.
Back then I still had some confidence that they knew what they were doing to me, but my opinion of medical science has been irreparably altered in recent years.
I personally don't think removing organs constitutes a 'cure' - I see it as a cop-out - and this includes gallbladders, tonsils, appendixes, etc... If these organ were useless, we wouldn't have been born with them.
If you really want to cure your endo painlessly, consider this:
Graham's own research indicates that magnetic fields can alter two other hormones that affect cancer risk -- estrogen and testosterone.
Compared to measurements taken in the presence of negligible background fields, overnight exposure of women to 200-mG EMFs in the laboratory significantly elevated estrogen; other studies have shown that elevated exposure to estrogen over many years can increase a woman's breast cancer risk.
In men, the EMFs reduced testosterone-a hormone drop that has been linked to testicular and prostate cancers, Graham's most intriguing data come from experiments with what he terms intermittent EMFs.
He and Mary R. Cook, also at MRI, began delivering pulsed exposures that cycle on for an hour and then off for an hour throughout the night. During each "on" cycle, the field switches on and off every 15 seconds.
Not only do preliminary studies indicate that intermittent fields "really have an effect," Graham observes, but they emulate real-world exposures, which can vary from second to second in frequency, intensity, and waveform, depending on their source and an individual's distance from it.
So it may not even be a matter of too little progesterone, but perhaps it has more to do with too much estrogen. So your idea of adding natural progesterone might help initially, but what will the excess estrogen be doing to you long term? That would be my concern.
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posted
Thanks for the responses guys. I will be sending some of you pm's shortly.
I do have pain from the endo, but for the most part it's something I can endure. I'm not a spring chicken but I do want the chance to have one child.
Reading what I have about Lepron seems that I'll be worse off taking it. I already have severe anxiety from the lyme.
I honestly don't think I can take any more symptoms at this point. I've been told by one GYN that I have PCOS, but the endocrinologist says no.
So I'm going to go to meet with the GYN and see what she has to say and pray that she'll at least hear me about natural progesterone.
My husband thinks that half of my lyme symptoms are from the extra hormones related to the endometriosis so he's all for the Lupron.
I see such scary things about it. It looks like for some the side effects never go away and the endo comes back about 60% of the time.
If anyone out there has had sucess with an alternate treatment (other than having a hysto or lupron) please let me know so I'll have something to take to the GYN to back up my request.
Thanks
Posts: 237 | From WV | Registered: Mar 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Glad you got lots of replies.
Just to throw this idea out there - my husband is super endo-literate. Very knowledgeable on everything I tried - including Lupron. He has mentioned talking with other men w/ partners who have endo (I volunteered with a national endo hotline for awhile).
If your hubby wants a guy's perspective on living with endo, or living with a wife on Lupron, maybe they could talk? At least my hubby could tell you guys about the experience, from the other side of the coin.
Just a thought.
I hope you find all the answers you need.
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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daise
Unregistered
posted
motownlyme,
On PCOS, probably believe the GYN, not the endo. Most endo's are hostile to women thinking they may have PCOS.
I suggest: The Savvy Womans Guide To PCOS, by Elizabeth Lee Vliet, MD.
posted
I suffered with endometrioisis symptoms since age 11. I didn't get officially diagnosed until age 32. By then severe damage was done.
The averge OB/GYN is not qualified to treat endo. Seek out a reproductive endocrinologist. They see the most cases of endo.
I had stage 4 endo. There is no stage 5. Most of it was growing in my recto-vaginal septum. That's the space behind the uterus or the space between the rectum and vagina.
Endo comes in many different forms. The implants can be of different colors. Unless you are seeing a top notch expert you are wasting your time and health care dollars.
Lupron induces a state of menopause. Sometimes that eliminates the pain. Sometimes it does not. Lupron is not a cure but it can give you a break from the pain until you decide what to do on a long term basis.
For me, Lupron induced a severe state of menopause very quickly. By the second shot I was sorry I took it. I felt horrible the whole time. Danazol was a better option for me.
Whatever you do DO NOT take Lupron and have surgery to remove the endo. It's being shrunk down while on Lupron or Danazol. It it can't be seen it won't be removed. The deep fibrotic nodules need to be taken out too.
Most OB/GYNs just do hysterectomies or removing organs while leaving the endo behind. This is not a cure!
This tissue continues to cause pain AFTER hysterectomy in many women. A full 1/3 of women do experience endo pain AFTER hysterectomy.
My endo was removed by one of the top endo docs in the world in 1993! I've been pain free ever since.
Many women have less pain with candida treatment and diet. There seems to be a link between endo and dioxin or pesticides.
BTW, I am the former president of the Chicago Chapter of the Endometriosis Association. We had 550 members and 6 support groups in Chicago. I ran the support group in Oak Park, IL.
The biggest thing women with endo struggle with is CFS/FM. I do believe hypercoagulation is an issue with endometriosis.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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