posted
Just wondering if any of you have experienced heavy and prolonged menstrual bleeding with Lyme?
I am 44 and have been bleeding since July. Had the procedure to heat ablate the uterus Friday, but there was scar tissue covering the uterus and the doctor could not get through the cervix to the uterus.
Am still bleeding very heavily. Any suggestions? Have birth control pills helped anyone in this situation? Don't feel I have the strength for a hysterectomy which would be the doc's suggestion if I did not have Lyme. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
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So sorry to hear about your bleeding troubles... unfortunately, it seems to be fairly common with this stinkin' illness.
I did a somewhat formal survey a few months ago and found a very high correlation between Lyme and menstrual problems, usually excessive bleeding. A large percentage of respondents ended up getting some sort of surgical procedure done, such as an ablation or hysterectomy. Almost all of them were satisfied with that decision.
Personally, I have experienced this for years and have had three different doctors recommend ablation and hysterectomy. Ablation frightens me more, because there is a chance it won't work, there are lots of risks (ie - puncturing and burning other organs), and if you get pregnant afterwards, it can kill you.
I have tried desperately for the last several YEARS to ease the bleeding, with very limited success. I have been on pills (with no break in-between to allow a period... which didn't work), the patch, the ring, creams... you name it. Of all of them, I think the progesterone cream helped more than anything else (though I ended up using it in much larger doses than originally prescribed). I think it gave me whole two-week break at one point.
My LLMD said the problem would likely get better as the Lyme is treated, but I am tired of the hassle, pain and anemia, and I think I am now psychologically ready to schedule a hysterectomy. I know my husband is ready for it!
I would suggest having your hormone levels tested, which can be very revealing and may give your doctor a better idea of how to approach this.
Good luck!!! I hope the situation improves for you.
Posts: 220 | From central TX | Registered: Jun 2005
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Yes, I've had excessive bleeding. But I had fibroid tumors and endometriosis. Do you have either of those causing the bleeding, or do they not know what's causing it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks for the help. Lymetoo, they don't know what is causing it, since they cannot get to the uterus. Doctor suspects endometriosis, but it could be a hormone problem.
However, how do you test for hormones when a blood test only shows a snapshot of one day. I am thinking of trying the pill and as I get stronger consider a hysterectomy (GULP! Argh!)
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Yes, I had very heavy bleeding, and did have a uterine ablation. I was very anemic due to the heavy bleeding. Please have the doctor check your ferritin level. If it is less than 50 ng/mL then consult with your doctor about supplementing with iron until it is over 50. My iron doc wanted my ferritin at 100 before I quit taking iron.
With the heavy bleeding you might not be able to get your iron stores up. I couldn't even though I was taking 200 mg Elemental iron daily. So, that is why I had the uterine ablation.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
The docs should order a pelvic ultrasound, and I wonder why they have not done so already?? That can give them a lot more info and enable them a way to "see" inside your uterus.
The doc will probably draw your blood several times throughout a month to get a good overall picture of your hormone levels. (My draws determined that my hormone levels are equal to those of a woman in menopause... and I ain't even close to that yet).
Go ahead and give the pill a try. It didn't do diddly for me, but maybe you will be one of the lucky ones. And YES, have your iron levels tested! Anemia will make you very tired, among other things.
Posts: 220 | From central TX | Registered: Jun 2005
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posted
Hi Hiker. I think I remember reading a post from you that you had been doing the Salt & C for a year? Do you think that could cause a domino effect leading to heavy menses? Just a thought..
Posts: 89 | From Ohio | Registered: Mar 2006
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posted
Did the pelvic ultrasound. It showed some fibroids, but nothing else abnormal. The doctor says he feels the uterus is small and deformed --either congenital or due to an infection he isn't sure.
Thanks for the reminder about the iron. I do take iron and my levels are normal.
I quit the salt/C protocol a couple of weeks ago. Ironically my blood pressure went down while I was on it. And then due to the bleeding my pressure today was 100/55--no wonder I am a dizzy broad.
Has anyone had a hysterectomy while infected with Lyme. I just can't imagine the recovery time involved. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
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posted
I have had wonderful results after taking a low-dose birth control pill. I've been on this particular pill for about a year and haven't had any problems... The pill I was on before, however, was high-dose, made me feel like crap, and didn't do anything to help with my periods.
I was seeing a GYN that was a complete butcher and wanted do a hysterectomy on me at 23. I wasn't having it, and switched docs. My "good" GYN switche the birth control pills and viola! GYN issues are gone.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
quote:Originally posted by hiker53: Has anyone had a hysterectomy while infected with Lyme. I just can't imagine the recovery time involved. Hiker
ME. I even had the incision kind. The recovery was not too bad, but I didn't KNOW I had Lyme and they gave me flagyl for about 4 wks for an infection.
and of course, we did NOT ramp up!!!
I felt like dying for about 2 months until they finally put me on antidepresants. [for the first time...been on them ever since]
But physically, it wasn't bad at all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
I had a hysterectomy leaving the ovaries; NOT knowing I had chronic lyme for around 25-30 years at that time. Went well.
I would recommend an epidurmal for pain! Helped me tremendously. off work 6 weeks, and eventually to work those muscles...bending, etc. like you were at a desk working.
I was always a heavy bleeder for the entire period of 5 days; not months at a time. Bettyg
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posted
Will have to try that, Betty, thanks for the tip.
I'm such a heavy and constant bleeder that I have come *extremely* close to needing blood transfusions multiple times, and actually fainted because the loss of blood dropped my blood pressure so low.
I'm tired of it. It's been 8 years... time to move on to something else.
Posts: 220 | From central TX | Registered: Jun 2005
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The risks of heat ablation are minimal compared to a hysterectomy. Since I am single and 44(an abstinent Christian) I don't worry about the pregnancy issue, but it would be a risk for some.
It's been almost a week since my procedure and I am still recovering. Can't imagine what a hysterectomy would do to me, but I definitely can't go on like this. Good luck if you have to make a decision. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10182 | From Illinois | Registered: Aug 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I have been dealing with pelvic issues and lyme for many years. We all (docs and me)believe they are feeding eachother....most likely the lyme came first.
I have had 8 surgeries while I knew I had lyme. I just had 4 surgeries this summer! The 4 this summer are all related to an oopherectomy (ovary removal) that burned my ureter this june. The following 3 surgeries were urology surgeries for stenting and trying to open up the ureter. It has been a nightmare, but not particularly because i have lyme.
Last year I had a 4 hour long pelvic surgery and kept all my parts and I felt TONS AND TONS better after initial post-op. Even my lyme sx were somewhat better. but the darn endo came back.
I have at least one more surgery ahead of me in the next month or so. My docs and I are now considering FULL hysto because my pelvis is just riddled with endo, adhesions, complex cysts, remnant cysts, fibroids and you name it.
I am 34 years old BTW.
A hyst is really a big leap...I cant remember what else you tried? I would exhaust some other options first because once it is gone it is GONE. And all our female organs help us in many ways we dont understand yet.
One thing is for sure---if you are a lyme patient, sit your surgeon down and tell them---everything that can go wrong WILL and I will be in the 1% here so you better be prepared to deal with ANYTHING. My surgeons only WISH they had listened to that the first day I met them.
just my ramblings, hope it helps, try joining HYSTER SISTERS discussion group as other suggested to me---very good info there, MUCH SLOWER than this board though. good luck, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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