Topic: Do you have endometriosis or are on birth control??
disturbedme
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I was just diagnosed August 17, 2011 with endo after having a laparoscopy. I had a large cyst on my left ovary and we didn't know what kind of cyst it was (except that it was complex) until after the laparoscopy when my surgeon said that it was an endometrioma (or chocolate cyst) and that he also found a couple of spots of endo which he burned off.
I'm just wondering about the other ladies here who have had endo and what did you do? I am really not sure what I want to do. I have narrowed down the types of birth control safest for myself to take would be a mini pill like Micronor. I definitely don't want to take a combined pill with estrogen in it. I was also looking into progesterone cream, but I am sick of all my health problems and don't want a lot of work involved. I feel like taking a pill will just be easier (albeit, I will have to remember taking it at the right time, but that doesn't worry me since I will set an alarm).
Has anyone here gotten on birth control to keep your endo under control?
I really wish this wouldn't have happened. I never even knew I had endo until this cyst developed (and I am scared for it to happen again - I definitely don't want another surgery!!!!!!). I guess it's a good thing since now I know I have endo and it's obviously the reason why my menstrual periods are SOOOOOOOO extremely painful, but since I had the surgery I have more cramps (during all times of my cycle, not just during my period), which sucks big time. :-( I feel like the surgey did more harm than good sometimes.
I am just thinking of taking the birth control and hoping that it controls the endo for a few years until my husband and I want to have kid(s). The only thing I am worried about with the birth control is blood clot risk, even though with a mini pill (or progesterone only), the risk is supposed to be much smaller than that of the combined pill... but ANY risk scares me to the point of not wanting to even try it, though I don't have many other options.
I'd just like to hear from those with endometriosis and those who have been on birth control (with or without endo) and how the birth control was for you. Your experiences with it. Any of you take the progesterone-only pill?
Thanks!!!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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You might want to consider moving the date up for having kids if your health allows. Pregnancy has the same effect as the birth control pill as far as controlling endo, and it can be difficult to get pregnant with endo.
I use progesterone cream the second half of my cycle (I'm close to 50, so need it for other reasons) and it's not hard, just at night before bed. But I don't know whether it's strong enough for endometriosis.
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disturbedme
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LOL. Totally not ready for kids right now. :-( I have too many health problems and don't feel right getting pregnant and bringing a kid into the world with all the problems I have to deal with on a daily basis. I was hoping in a few years I'd be healthier and we'd be able to try. Though I do know endo can cause infertility, but as of right now I know I am not infertile, so I'm not worried about that either.
I've got to think of myself right now only, unfortunately. I wish it didn't have to be like that.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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penguingirl
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I have endometriosis since Nov 2002 and have been taking birth control pills daily since then.
I had a random period over a month ago when I started taking Serrapeptase but that might be coincidence. My LLND said that antibiotics greatly reduce the effectiveness of BC pills so maybe it caused me to get a period.
I also had laparoscopy surgery many years ago which helped remove the tumors. I have been maintaining it at Stage 1 by using the BC pills.
But I do want to figure out a less pharmaceutical way to overcome this once I have my lyme under control. My dr recommends IUD. I know many don't use that. But that won't help the endo situation.
Maybe if I take enough iodine I can accomplish the same effect!
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disturbedme
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I read about the IUD too and though I would like to do that, I've read how majorly, majorly painful it is upon being inserted and for a few days/weeks after that and that scared me away from it. I deal with enough pain from cramps and my period cramps so I didn't want to deal with that at first. :-\
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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James1979
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I'm tired of saying it, but I'll say it again: Endometriosis, cysts, fibrocystic breasts, thyroid problems... these are all caused or exacerbated by iodine deficiency.
I bet you anything you also have some kind of thyroid disorder. If you didn't find it now, they'll find it later.
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disturbedme
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James, you don't have to say it so RUDELY.
I used to have a thyroid disorder but after going gluten free, it cleared up on its own. The levels since then have been good. But yeah, I might need to be on thyroid meds later... who knows.
I was on iodine treatment a long time ago. Can I get iodine at any vitamin store?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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penguingirl
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James - I gave the iodine plug in my post! You would be so proud??
Disturbed - apparently the IUD is the most recommmended form of BC for ob/gyns. Even my naturopath dr recommends it. Maybe it is the same as Mirena or somethign like that? I don't know.. I think if it is just a few days of pain I can handle not having to take a pill every day.
But I understand - those cramps are just overwhelming. I think the more periods you have the more you just aggravate the endo. My periods were so bad - I was like the niagra falls. Not normal.
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scorpiogirl
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quote:Originally posted by disturbedme: James, you don't have to say it so RUDELY.
I used to have a thyroid disorder but after going gluten free, it cleared up on its own. The levels since then have been good. But yeah, I might need to be on thyroid meds later... who knows.
I was on iodine treatment a long time ago. Can I get iodine at any vitamin store?
Disturbedme,
I don't think James meant to SOUND rude... he's probably saying that w/ affections but just not able to convey that over the net.
I'm sorry you're having issues. I hope it things improve for you soon!
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disturbedme
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My periods are not heavy, but they have always been extremely painful, since I first got my period at 12 years old. Sooooo much extreme pain. It got to the point that I would be scared to have another period.
That is what I thought you meant by IUD. I thought of the Mirena, which too is supposed to only be progesterone. But I've read that it can be even more painful during placement if you've never had a child. Which I haven't. So a lot of things about it just scare me. :-\
Makes me mad... Men have NO idea what we go through being a woman and how much pain we have to endure. Not even close.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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James1979
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Yeah, I sincerely apologize. I wasn't trying to sound sassy.
It's such an important supplement, I wish over 90% of the people here would be taking it. Too bad most doctors are clueless about iodine, so people don't know about it.
That's why I mention it so often. I truly believe that it would help ALL of us with many of our problems. And it definitely boosts the immune system, so why not?
(P.S. Where I come from, everybody kisses everybody, so please don't think I'm trying to be provocative or anything. Even the men kiss the men, 3 times!! )
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penguingirl
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I know what you mean. It is very unfair to have to go through this.
Sadly I think more women out there are suffering from this - and some of them don't address it soon enough and then suffer with infertility on top of it.
I don't know enough about the Mirena. I also heard that you shouldn't get it unless you had a child which I have not as well.
So hmmm what to do.
Personally I think BC pills were the best thing for me since I have NO periods (every 3 weeks switch to next pack) and then at least you can avoid that keeling over pain cycles. You will have other symptoms like headaches, fatigue, breast pain, but it is nothing like bleeding like niagra falls with clots (sorry TMI).
I am on Necon 1/35 which is supposed to be one of the best ones for endo.
just know that Rifampin will reduce the effectiveness but it is still the best way I am dealing with it.
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penguingirl
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James - back at you!
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scorpiogirl
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Hi Disturbedme,
Take a look at this... you may or may not find it helpful... but my girlfriend swears that once she changed her diet her problems went away!
I have read that due to our diets, more and more young girls are have ovarian cysts!!
My girlfriend suffered 7 miscarriages in 17 years. After she cut out hydrogenated oils she conceived and carried to term for the first time at age 43!! Anyway, take a look at the links.
It's such an important supplement, I wish over 90% of the people here would be taking it. Too bad most doctors are clueless about iodine, so people don't know about it.
That's why I mention it so often. I truly believe that it would help ALL of us with many of our problems. And it definitely boosts the immune system, so why not?
I wish you the best.
The weirdest thing is James is one of the MOST polite people on Lyme Net. He's so polite sometimes I just want to smack him w/ a 2x4!!
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scorpiogirl
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quote:Originally posted by penguingirl: James - back at you!
Now now kids! No kissing or you'll pass your Lyme and Cos back and forth!!
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Jamers
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Hi Disturbed, Endometriosis is a very misunderstood, painful condition. I've had it since I was 15yrs old (Im now 28). I could go on and on about this topic and feel free to PM me if you want to chat about it.
I suffered for a long time and still do from this. When I was 17 I had a large fluid filled cyst removed along with an ovary, they found endometriosis with that laproscopy also. I took pain killers that never worked until I was 26 when I finally decided I needed BC pills. Sadly, the BC pill brought out my lyme symptoms and I became fully sick with lyme and co. I also found out i have a blood clotting disorder and taking BC pills can give me blood clots much faster than others so that is not an option anymore.
Just recently I saw a great neurologist who said that my blood clotting disorder can cause endometriosis!! (just an idea to get tested for this) He put me on a chinese herbal formula called Stir Field of Elixir a few weeks ago.
I also noticed that while treating Babesia my periods were barely noticeable. Now Im treating Bartonella and the pain is so extreme I vomited this month! This makes me very suspicious that Bartonella is making it much worse since it can cause hypercoagulation (again with the blood clotting issue). So now I wonder how long I've really had Bartonella/lyme. And once these are treated if endometriosis will be much better. My fingers are crossed.
By the way...I was tested for the gene for celiac disease so gluten is not the cause of mine. Also, my DHEA was very low and Im supplementing that, maybe this will help normalize hormones. I don't have thyroid issues either but that iodine supplementing sounds like a a great idea.
Hope that helps!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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James1979
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quote:Originally posted by scorpiogirl: [QUOTE]sometimes I just want to smack him w/ a 2x4!!
Scorpio with a 2x4 in her hand... Hm, that reminds me of one of my recent paintings.
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disturbedme
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Scorpiogirl - I actually have a good diet and watch the fats and saturated fats and trans fats I consume.
That is why I don't understand why so many bad things happen to me and yet I really, really try hard to look after myself. Since college, I was very proactive about my health and what I ate. I have been dairy free for over 7 years, gluten free for over 3 years; I watch the amount of saturated fat I eat a day. I don't eat anything with trans fats. I was also vegetarian and then vegan for about 6 years. I started eating meat again to try to help my health, and that's when I found out about the endo. (Not blaming meat on causing it. I don't know what caused it). I'm still eating meat, but am cutting back again.
I've also started taking a lot of vitamins that are supposed to help with endometriosis. But I still feel like I need to do something to REALLY, REALLY suppress it because I don't think just doing the diet and vitamins is enough since I've been healthy a good deal of my life and that didn't help.
The only thing I need to cut back on in my diet is soy and sugar (though I don't eat a lot of sugar as I'm not a fan of it. I don't have a sweet tooth at all). I was vegan for a while so I ate a lot of soy, but am definitely trying to cut soy out of my diet completely.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
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Jamers - did you know that you can test negative for Celiac on the blood test but that doesn't mean you don't have gluten intolerance (or even celiac as it's not a very accurate test)? I tested my gluten intolerance/celiac through saliva testing. Which is a much better and accurate test than any blood test for Celiac. It showed I had gluten intolerance only one point away from Celiac (it looks at how many antibodies your body has made any response to wheat/gluten).
Going gluten free helped my health immensely, but don't know how much it helped my endo... probably not much. But it helped other aspects of my health SO SO SO much.
My DHEA is also low so I should supplement that as well.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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Jamers
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BTW-Im not against Birth control pills, I WISH I could take them because they helped me greatly for the few months I was on them. I just like to caution people with endo that a blood clotting disorder may be involved and taking birth control could give you more problems.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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penguingirl
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Disturbed - I think it is also to best to avoid nightshade vegetables (green pepper, eggplant) for inflammation - it does aggravate the endo.
What is DHEA - I need to look that up.
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There are a lot of themes in the posts above which fit with my experiences of cysts, endometriosis, Mirena coil, Lyme and thyroid problems which seem uncanny.
I have always had painful periods since being a teenager. Then after having severe stomach pains in my 30's and a laproscopy, they found lots of blood inside me and thought that an ovarian cyst had probably burst. It was around this time that a lot of strange symptoms started to happen too (Now I know they were Lyme related).
About 9 months later after more bouts of stomach pain, I had my appendix out and at that point it was noticed that I had some endometriosis.I then seemed to get well again for a while and had my third child. After this last child, I then decided to have a Mirena coil fitted to help with my heavy, painful periods.The fitting of the coil for me was not painful and after several months my period disappeared to almost nothing and no pain, so the Mirena had worked very well for that problem. However after about 6 months,I then started to develop dizziness and painful sinuses/ headaches. Thinking it was due to the coil, I had it removed and my symptoms did seem to clear for a while. Then several months later they returned with a vengence. I ended up being referred to an ENT Consultant for chronic sinus infections who started me on clarithromycin.Then one week later I found I had problems walking, kept bursting into tears and was very thirsty ! (in hindsight, my first big herx). A couple of months later,I found out I had lyme.
Fast forwards 2.5 years and I was still having painful periods but then my LLMD started concentrating on Bartonella treatment with Bar-1 and my painful, heavy periods have completely gone, so my hypothesis for me is that it was Bartonella causing the painful periods/ endometriosis. In the interim, I had also started on thyroid meds too but have just recently reduced to a low dose of levothyroxine of 25 micrograms a day.
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disturbedme
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DHEA is actually a precurser to estrogen and progesterone (hormones). I've been low for a while and should have been taking supplementation for it for a while, but never got around to it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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penguingirl
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Ok thanks disturbed! I will have to check on my levels..
Ticksick - I also had an ovarian cyst that ruptured awhile before I got my typical lyme symptoms. It was so bad they thought it was initially a ruptured appendix. I wonder if that was related to lyme/iodine, etc but it was very scary.
The thing is - isn't endometriosis an autoimmune disease - so even though we can get our lyme/bart, etc under control, even if we get every levels checked and at a normal level, don't we have to still worry forever about endo pain?
It is quite depressing. I really hope if I ever have a daughter one day she won't have to put up with it because I also heard it could be hereditary.
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disturbedme
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Yeah, endo is supposedly an autoimmune thing and not curable (like lyme). It makes sense... I have other autoimmune issues, like pernicous anemia. I think once you have one autoimmune disease, it's easy to get more and more... :-( Not good.
And yes, it's also thought to be heriditary. I think I got it from my mom. She had a lot of intertility issues and had a lot of miscarraiges before she had me and my sister. I also know that one of my aunts had endo and eventually had a hysterectomy. I think more women have endo than is known. Just like more people have lyme than is known.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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penguingirl
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Yeah I agree - did you know that I had figured out I had endometriosis? It took a good 5 months or so to figure it out but no doctor could understand my pain.
I finally found a endo specialist who did the laparoscopy to confirm.
But until then I was on numerous narcotic pain killers- to the point Percoset doesn't work for me anymore - just makes me itchy. Now I would need morphine.
Did you try acupuncture? It really helped me for the unbearable times. Not too practical but it really helps the blood circulate.
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James1979
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Ladies, if you feel like it, please watch this short clip about how some experts view the relationship between endometriosis, ovarian cysts, thyroid disease, achlorohydria, and fibrocystic breast disease. The doctor who is speaking here is absolutely amazing, and I wish there were more doctors like him: http://www.youtube.com/watch?v=EoMfg76gAUo
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Jamers
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ticksickfamily-Interesting to hear that Bartonella could be the culprit for you too. I honestly dont believe its autoimmune for me, and I don't have it running in my family. After the neurologist mentioned the blood clotting or 'blood stasis' was causing it, I immediately thought of Bartonella. I guess only time will tell if it gets better.
I do think it can get better though, how else can you explain that pregnancy makes it go away?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Jamers
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Disturbedme- I had the celiac blood test before with was negative and was told that only the DNA test was accurate as 97% of celiac people have the DNA gene for it. Mine was negative for the DNA, but I do think gluten itself can cause the inflammation.
I actually am thinking of going gluten/dairy free to see if it helps with the inflammation.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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My endo isues started shortly before my lyme symptoms about 6 years ago. I had pelviscopy a little over a year ago. I have such severe adhesions he was not able to remove any implants. I have tried the following. 1 - BC pills...many types. comfort during the month was ok. Monthly visits left me in such severe pain I would vomit and/or pass out. So it was decided to try the 3 month pill packs, or skip periods all together. My body said no way and had periods anyways. 2 - Mirena IUC. 6 months of hell cramps, bleeding and constant pelvic pain. Removed it when my neuro symptoms started. 3 - Nuva Ring. HEAVY bleeding and it wouldn't stay in. Gave up after 1 week. 4 - Depot Lupron - 3 weeks of migraines, Then 6 months of relief. It can only be done 6 months at a time and can be repeated once. Gave me a preview of menopause... nice. But LOTS of warnings. I did it because I was miserable. 5 - Depot Provera - I'm on this now. I gained weight, but was very comfortable for a year. I started constant cramps, pelvic pain and bleeding 5 weeks ago. I'm seeing the OB/GYN monday. I think all that is left is a hysterectomy
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penguingirl
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Oh wow - finally lyme- you really have tried many things!
I was so scared of Lupron - I avoided it like the plague because early menopause meant potential osteoporosis, hot flashes, etc.
Well now I get hot flashes but that is thanks to babesia.
Thanks for your input on Mirena and Nuva Ring - I was wondering about those.
Have you tried taking BC pills continuously? It takes a few months/cycles for your body to adjust but mine eventually did and no periods for me since Nov 2002. I think for me that has helped tremendously. Not the best for candida but what can you do. Pick the battles I guess!
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I tried continuous BC pills for a year. About every 6 to 7 weeks my body would have a period anyways. But it would be all drawn out, so I would stop the pills for a few days to get it over with. Getting the Mirena put in was excruciating - but wasn't supposed to be. I really enjoyed my months on lupron, but I won't do it again. Between the lupron and provera I'm going to have enough bone loss... I might as well just have surgery!
-------------------- I have Lyme - but it doesn't have me. Posts: 70 | From ohio | Registered: Sep 2011
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IckyTicky
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I had severe endo after having only "a few spots" 3 years prior. I ended up having to have a complete hysterectomy at the age of 29 due to large complex "chocolate" cysts on my ovaries.
I have heard from an LLMD that she has a doctor friend who is doing her own studies. She is a GYN and has found so far that 100% of the hysterectomies she's done due to endo came back positive for Lyme disease. This was a few years ago.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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lymielauren28
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Add me to the endo list as well. I developed mine after getting sick with Lyme disease. I'm able to keep it under control with diet and lots of supplements. When I start to slip on my diet or supps it gets worse quick. I've never taken birth control so I can't be of any help there.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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disturbedme
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I have been watching my diet and taking many, many supplements to control it as well, but don't feel comfortable doing only that when I've had an endometrioma cyst and really don't want any more. Usually once you have an endometrioma you have to have surgery to remove it. I definitely don't want surgery again. I feel like I need to do something MORE than diet and supplements. If that makes sense.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
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I definitely don't want surgery again. I feel like I need to do something MORE than diet and supplements. If that makes sense.
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