Lyme Disease Support Group

I have been diagnosed with lyme disease for about 4 years and feel I had gotten it under control except for a few minor issues. Last May I had a surgery called endometrial ablation to stop the heavy flow of my periods. It was a complete failure and my lyme disease came back with a vengence. The pain in my legs was unbearable and it took me much longer than normal to recover. I had to go back on my lyme disease meds. Anyway, now my periods are even more miserable and the pain of the cramping is so bad. I have to take ibuprofen every couple hours and it still does not relieve all the pain. I am wondering if the culprit is my lyme disease or the failure of the endometrial ablation that I had. I am afraid to go and have a hysterectomy because my lyme disease interfered with me being able to recover from my last surgery, but I hate having these miserable menstrual cramps. Any suggestions?

Hi Madge!

Sorry to hear of your troubles, we lymies never seem to catch a break. As far as your question goes, all I know is this; before I was diagnosed with Lyme, I had a knee replacement due to old injuries never healing. Unfortunately, that surgury which was preformed a year ago, still has not healed. My knee is worse off than it was before. I know that since the lyme compromises your immune system, it could be that your reproductive system hasn't fully healed from the trauma of surgury. I also have Polycystic Ovarian Syndrome and my LLMD has told me that lyme definitley interferes with your hormones. The combination of these two things could be the cause of your probs. Is your gyno at all lyme literate? Maybe he/she can co-op with your LLMD to figure out something to help you!

Good luck, I know it's tough. Please feel free to write back with any questions or if you just want to vent, sometimes that's all I do, lol!

Take Care,

Meagan

Welcome.. I am sorry you are having so much trouble, we don't get a break as O HI O buckeye said love Ohio.. anyways, how old are you or better yet- are you planning on having children? Or unsure, I am surprised they didn't tell you what was best, unless they did and you have a right to be worried.I so many young women and Lyme sufferers who have had to have it. Polycystic ovary is becoming so common as well, shoot probably another 'Lyme' cause..

Ablation is honestly sometimes a bit more harsh than a hyst , you can have a LAVH (laparoscopic assisted Vag hysterectomy) where I know of people who have recovered much better and faster than an ablation/ D+C/ biopsy/etc. Even the immunocompromised. Lyme affects EVERYTHING and it's so tough to make that decision. Now I am assuming , that with the attempted/failed ablation- you know what your hormone levels are? If not 'right' the cramping could be 'female' related and actually not lyme, whereas sometimes a hyst IS warranted, you can leave the ovaries in, if okay, or , remove and replace with HRT hormone replacement therapy. If the hormonal levels are in 'check' , sometimes if they are on the low/high of the normal range, like Lyme, a clinical thing It doesn't HURT to try some hormones/birth control for a while to see if that little boost in hormones could help alleviate the cramps and pain.

I know it's tough to make that call, you had that procedure in May- any follow up? I am not one to talk, since Lyme hit me and knocked me down and out for the last ten years, I neglected a few areas once I found my llmd last fall. I made the mistake of letting him take the burden off my shoulders of being a full time care co ordinator and self advocate, started meds, got sicker, and , ignored my other docs/appts. Too sick

I will stop, late and rambling, Assuming you had a follow up, an ultrasound/etc to have a look to see why a failure and you have to make the decision, which none of us can make, I will tell you my gut feeling and experience-if you do decide to go ahead with a hysterectomy (I would for sure, that's me) you may wish you would have done it alot sooner. Everyone I know, Lymie or not, says the SAME thing. Please ask around, in the morning you will find the rest of the forum awake and plenty of advice will flow your way.. No pun intended.

Welcome again, where a serious issue/answer can turn into a complete sick laugh at the end. it's all good. Maybe if you have time, post if you are on anything other than motrin. For Lyme, that' s like skittles

It could be other things going on....Female wise that is....

I know we tend to blame everything we feel on lyme, when in fact its more going on that is causing what we are feeling...I would go back to the Dr. and explain things have gotten worse...

I had to have a total hyst due to heavy periods and three tumors. I had many D&C's, etc after two months my bleeding came back worse and worse...

As I don't know how old you are, please try and advoid a Hyts, its not as easy as some think. Your body goes through many changes afterwards and can take years for your body to adjust (mine did)..I also had a complete Hyst. Yes you can go on HRT, again, not a joy to have to do....

Julie

'm so sorry you are experiencing this difficulty, I had the same thing but an ablation worked for me.

It seems that a hysterectomy would be the only step left for you to take, so perhaps you could discuss this thoroughly with the surgeon to see what after care you would be offered.

Madge - Lyme can absolutely affect your menstrual cycle and it sounds like your dealing with some of the problems I am with it right now. My periods had gone all out of whack, I was bleeding every couple weeks and my cramps were beyond severe sending me to the ER more than once. Of course, my ob/gyn and the ER doctors all have done pelvic exams, ultrasounds, CT scans and tell me there's nothing wrong with me that can cause these problems and that kind of pain. When I first saw my LLMD and started my Lyme treatment my LLMD said those problems could absolutely be caused by the Lyme (as well as infertility).

Since starting my treatment, which includes testosterone and DHEA, all problems have gone away except for the pain. I talked to him more about that yesterday and he is starting me on progesterone which I will take days 14-28. I haven't had a chance to try it yet, and I'm definitely skeptical since nothing else really helps the pain, but I'm willing to give anything a try!

Let me know if you hear or anything or find anything that helps! I know how much it can disrupt your life...I hope you find help with it!!

Please and I can't stress this enough be very careful with Testosterone, I really hope that they took a hormone test on you first before giving this to you...If you already have enough in your body, adding more can Overdose your body on it....

Happened to my sister, she almost had a heart attack from it...They found out she had more than enough in her body, giving more when you already have enough is not a good thing....

They did test and they monitor me. They tested my hormone levels when I wake up and again later in the day. My proportions were off. But I have seen HUGE improvements since starting that and the DHEA.

Scary what happened to your sister! I don't think anyone should blind mess with your hormone levels. They play a pretty big role.

Good, so glad they did....

I have had Lyme disease for over 25 years - undiagnosed of course until last year. One thing I also suffered terribly with was endometriosis and severely heavy painful periods. I had several surgeries for the endo and eventually had to have my right ovary removed as it was plastered to my abdominal wall from a past exploded endo cyst. What is interesting, is that recently I came across an article by a surgeon who specializes in endometriosis who took it upon himself to test some of the endometrial tissue he removed during surgeries for the presence of Lyme spirochetes and guess what? BINGO! We have a winner. A statistically huge number had Lyme present. Don't let them turn you into a eunich to get rid of the pain. Kill the Lyme and see if that helps stop the problems. Also, seeing a really good specialist who can remove a lot of the lesions endoscopically can really help alleviate your symptoms for quite some time (in my case, the first surgery lasted 12 years).