trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Okay folks,
Most know my deal but in a nutshell: I have severe endometriosis as well as chronic lyme. I had surgery last august with a well known endo excisionist. His stats report that of women who undergo surgery with him for endo removal only 1% will have a recurrence of it within a year.
Well that is now officially me in a big way.
Major endo recurrence was confirmed during my surgery to remove my right ovary and tube 3 weeks ago. The right ovary had huge endometriomas in it and we had hoped the endo was localised there, but it was throughout my pelvis again.
I also have very large fibroids. Some have been removed, but now I am growing even larger ones.
I not only notice a flare in lyme symptoms mid cycle and during my period but a MAJOR flare each and every time. Not to mention complete and total insanity hormonally.
I have not faired well with birth control pills. Or other methods of hormone supression.
I am considering taking it all out. and not using HRT. Just get these hormone levels as low as possible to get rid of these symptoms.
Complete hysterectomy does not cure endometriosis, by the way. It sometimes does not even slow it down. It is about as poorly understood as lyme.
I just turned 34 and no kids. I have grieved my loss of having children many many times, but when I think that this decision would make it final I get all teary again. Or maybe that is my hormones.
Are there any stories out there about hystorecomies being helpful for women with Lyme?
CAn anyone find me info about the researcher at DAVIS who worked with hormones and lyme?
Comments, suggestions, rants, raves, photos, tears, anything you want to offer, but be kind please, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
Hi Trails,
I had a hysterectomy leaving the ovaries. Went thru menopause these last 2 years.
I did not go on hormone therpy; went well except for the terrible HOT FLASHES AT NIGHT TIME. I kept ceiling fan going constantly.
I didn't know I had lyme back then. Also had an epidermal injection; felt really good until it was taken out a few days later but made moving around tolerable.
From what you discussed, I went thru a lot of that.
My late sister had a hysterectomy and had to have more done since her doc messed up with her.
Fibroids are painful. good luck Trails. I do NOT regret my hysterectomy at all; helped on some issues; not on others.
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robi
Frequent Contributor (1K+ posts)
Member # 5547
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Carol B
Unregistered
posted
Trails-can I assume you still have your left ovary??? Do you still want to have children???
I saw a story recently about a young woman who had cancer, and she had her eggs harvested before undergoing treatment, Her sister I believe was the surrogate mother. The young woman now has a set of beautifutl twin girls.
Is there a chance of harvesting remaining eggs so you don't have to give up the idea of ever having your own children?
I had a total hysterectomy in March 2006, including the ovaries, but having more children was not an issue for me. There's a great site called Hystersysters.com that someone turned me onto-and I did a lot of posting there for a while.
Now Lymenet is my new online home.
Although it was intense at the time-now every once in a while I think- Oh yeah-I'm one of those women who had a hysterectomy-like I have to remind myself .
posted
I had a total hysterectomy at age 46 in 2002. If I knew then what I know now, I NEVER would have had it done. Turns out I had bunches of fibroids that were causing extreme bleeding at time of period. (Interestingly I never had that Lyme flare a lot of women get once a month.) Anyway I had a woman doc but she referred me to a male partner when she went on maternity leave. Because I also had an ovarian cyst that looked bad and was slowly growing, and my bloodwork showed an elevated C-125 (common with ovarian cancer) this doc advised me to have a complete hysterectomy sooner rather than later. In fact they had an oncology team standing by in the operating room.
I got scared to death and agreed. I was supposed to have laproscopic surgery for the cyst and some type of procedure where they collapsed the fibroids, but I figured at age 46 I wasn't going to have any kids anyway. Turns out the ovarian cyst was benign, but he took it out plus the tube PLUS he took the other ovary out - against my recommendation - because he said it had a small cyst on it and I'd "be back in 5 years for that one anyway." But the interesting thing is I also had SEVERE endometriosis, and never knew it - never had a symptom. Anyway, the recovery period was agonizing (poor pain control) and with the Lyme I still don't have my stamina (such as it is) back. It was 2 years before I felt even a little better. I've been on the patch and no problems with it, but this instant menopause was brutal.
As I said, I never would have had it done. Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Trails,
I'm so sorry you're going through this. It's rotten, and a bum deal, and I completely understand. I have no answers, only empathy.
I'm a lifetime member of the Endo Assoc - still get phone calls from the crisis line. It's hard to know what to say, because we're all so different, and I know that Lyme is a complicating issue for lots of us. It was for me. Luckily, you already know you have Lyme & co's, and you've got great support (yay Lymenet)! Check out hystersisters, too...
After years of deliberation, surgeries, and treatments, I did make the choice for a hyst. My career (SW archaeology) was in the tubes - couldn't concentrate, couldn't hike out to the sites, and on my final job I was so messed up from Lupron that I was throwing up behind my tent all night. I couldn't go on.
My doc in ABQ gave me the "have kids, it helps" talk - but I couldn't do it. I was in too much pain, didn't think I'd survive it, and wasn't ready. Couldn't bring myself to have kids before being ready, because of a disease - even though I wanted them eventually. I grieved and grieved... then just hit a wall.
I don't mean to relay too much about me, just want to find a way to let you know I understand the pain, and the intensely personal path each of us take when heading toward that decision.
Ok, so... hysterectomy-ically speaking, you're one brave chick! Have it all out and then surgical menopause - that's the best shot still, right? I'm the same age as you now, but I was 28 when I had the hyst, so it's been awhile.
I made the optimistic (I was informed, too) choice to keep my ovaries. Figured I'd have 'em out later, and there was that exceedingly slim chance a partial hyst would work out. My next option would be to have 'em out and then no HRT, same as you. My way of making sure there was one more option - don't know why, but I always want a back door. I didn't have the ovary issues that I think you do, so that was an option for me.
My endo has had its ups and downs since the hyst. Overall, it's definitely improved, and I'm comfortable with my choice. I've had almost no pelvic pain for about a year! (thought I had some, but it was gall stones)
I have noticed an improvement in endo symptoms since starting Lyme & babs treatment.
The grief about losing the choice to have kids came in waves. You're going to make the best decision that you can make, and knowing that you did so helps...
A happy note on the kid topic - adoption is way cool! My son is 2, and I was at every ultrasound, every doc appt, and at his birth! My hysterectomy was just a stepping stone along the way to our finding each other. Adoption with Lyme is possible - although I've needed lots o' help from the madre while herxing.
Wish I had more specific answers to your questions... just wanted to share my personal experience, and let you know mine's been mostly a good one. Doesn't mean it's right for you, but it's worked out for me.
Yikes, this was a ramble, rant, whatever... Hope you're not asleep now!
Sending endo-free vibes your way!
-------------------- �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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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I had a total hysterectomy 18 months ago after finding several septated cysts on both ovaries and having lots of abdominal pain. I'm 48 and have my kids already, so wasn't sad to see the equipment go.
Immediate withdrawl of hormones was brutal...I was a total nut case.
Now I am on natural, compounded hormones....very low levels of the sort of hormones that don't lead to nearly as many problems in the future.
If you decide to go through with the surgery speak to your MD about compounded, natural hormones first. They are MUCH easier to work with than the regular prescription kind, require less to achieve the same effect, and you can titrate them to your needs (they come as a liquid and are taken with a dropper, so you increase by drops until you reach a tolerable level).
I had the open procedure, not laproscopic...It takes six weeks to get over the surgery and you MUST take it easy for as long as the doctor says to. If you push yourself, the recovery can double or triple.
Enjoy the time off...write...you have the excuse to get everyone in the family to finally do what they should have been doing before!
Posts: 1062 | From CA USA | Registered: Jan 2001
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posted
I had a complete hysterectomy at age 39. The immediate "menopause" was not a problem since I went on HRT two days after the surgery.
I had endometriosis, fibroid tumors, and heavy bleeding. I don't miss any of the stuff they took!!
I did find out several years ago [via my wonderful LLMD] that one thing the ovaries produce, besides estrogen, is testosterone. Once I began on the testosterone cream, I began to have more energy. It's one of those "little" things GYN docs fail to mention!
I think harvesting your eggs would be a super idea!!
and I'm sorry you are so miserable. The stress is a killer for you, I'm sure.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thanks everyone!
AS far as harvesting eggs--- no can do. It is very expensive. Not only can I not afford it, I have a real political difficulty with the bio baby industry as it is only attainable for the rich. I also have some genetic stuff in my family background that is a real problem and I dont want it to continue. (Spina bifida and neural tube defects. My sis has it and another sis lost her baby to it.) Cant risk it.
Cactus--that is great news you were able to adopt!!!! I do hope to do this one day. Of course I grow older every minute and I keep hoping I will be healthier, but each year seems to hold less health instead of more. I have been looking at adopting and fostering for years. I just need to be able to stabilize me first, then I can take care of others.
So back to the subject at hand---hysterectomy. As it turned out I went into a tail spin of surgical caused menopaise almost right after I wrote this post and let me tell you---hormones are my bestest friends and I want them in my life.
sorry my lymie life got spread out between these two posts. Trying to condense them back now for future researchers. Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I had complete hyst (open) almost a year ago. Wish I had done it sooner. Symptoms are much less since. Post-surgery pain controlled with epidural for 36 hours - no pain med at all after that.
Posts: 11 | From Houston, TX, USA | Registered: Aug 2003
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, I am so sorry that you continue to have such pain, on all levels..
I had a laproscopic proceedure 3 years ago and kept the ovaries so far..I had reoccuring and enlarged fibriods and non stop flooding..So it was die or have surgery.
I can not do hrt due to every female in the family having breast cancer..But even retaining the ovaries, I had 10-12 hot flashes per day for awhile.
ANd the worst part is I did it as an out patient. THE Dr said I was tough enough to go home and he didn't want me getting any new bugs from the hospital..
I was fine until 2 am when I had to go the bathroom and could not awaken anyone..I did it but what a painful night. He gave me meds that I was allergic to and did not discover it until way to late. So managed on chugging tylenols.
I hope you can find relief without this if possible. Hugs to you..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I do not have endo like so many of you, but perhaps y'all can offer me your opinions on this similar situation?
I have been bleeding almost non-stop since my son was born 29 months ago! I have been on every cream, pill, patch, shot, ring, you name it. (Actually, the Depo shot intensified my Lyme symptoms horrifically and I had to quit it). I have had 2 docs recommend an endometrial oblation, and a third recommend a hyster.
My LLMD, though, says that it is all Lyme-related and that if I can get my Lyme under control, the hormones can be regulated better. The problem is that my Lyme is not getting under control and I am so sick from all this bleeding. Should I just go ahead and get one of the procedures done? It sounds like some of you are glad you did and some wish they didn't.
Posts: 220 | From central TX | Registered: Jun 2005
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