I haven't posted for quite a long time, but now I need input from female Lymies.
I need to have a hysterectomy due to a gyn condition unrelated to Lyme, but it seems that I have no options other than a hysterectomy. I've been to three docs who have reached similar conclusions.
Has anyone out there with Lyme had such a major surgery? (laproscopically and removal of uteras only) How did it affect your Lyme and how did you manage altogeth.
Also, has anyone out there had Lupron injections,( which had been suggested by one doc) and if so how did these long-acting injections affect your Lyme symptoms?
I would appreciate any responses.
Thanks loads, Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Talktel, I had a partial hysterectomy about 2 yrs into the illness. The lyme has also caused many difficulties and I thought it was best.
I had this image that millions of ketes were at home in my uterus and when they removed it the ketes would all be gone with it. lol
But seriously it did help not having all those extra female problems. I've never regretted it.
I did spike fevers during my hospital stay. Nurses and everyone got all concerned because they were giving me my abx protocol at the time.
They couldn't seem to control it. So puzzling to them? I laughed at them because I knew they weren't in control.
As far as feeling bad afterwards, it wasn't bad. My job at that time could be done on computer from home and I went to work full-time the next week.
That wasn't so smart or in my best interest. I was the type that work came before my health. No more.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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I'm having Lyme fevers now and am feeling symptomatic now. But these female issues are worsening all my Lyme symptoms and knocking me out, and the progesterone hormones that I'm on are not great for me neither .
I would be having a full hysterectomy, which would involve only an overnight stay.
Did you Lyme symptoms settle down somet time after your surgery? How long?
I also work from a computer in my home, but I don't know when I will be up to working after surgery. (between Lyme and surgery)
Lymehead.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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cactus
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posted
So sorry you're dealing with this on top of Lyme.
(By the way, there is some evidence that chronic infection is linked to endometriosis and adenomyosis - so there could well be a connection.)
Here's my Lupron and hyst experience...
I had Lupron injections in '99 and would not recommend them.
This was prior to being diagnosed with Lyme - so my Lyme and co were untreated at the time.
But - as for Lupron... I had monthly injections, and had terrible side effects the entire time.
Very little pain relief (for about 2 weeks of each month, I did have some relief), nausea, vomiting, dizziness, fatigue, vision issues, and muscular pain which at the time I did not know was a side effect.
Stuck it out for the entire course of Lupron because I was desperate.
But... one month after finishing the Lupron I was back in the ER with excruciating pain.
2 months later another laproscopic surgery showed endo and adeno. So much for Lupron.
Oh, and this was after the pres of the gyn association in my state had told me that it was "impossible" that I could have those issues after completing the course of Lupron.
2 weeks after that surgery, I opted for a hysterectomy at 27.
As for the recovery from the hyst... I think, knowing that you have Lyme, there are precautions you can take that will help.
Ask for no steroids in your anesthesia, keep taking your abx, and plan for an extended recovery time so you take it easy.
Feel free to pm me if you want more specific info on the Lupron or hyst experiences... I'll be happy to share.
Sending healing thoughts, 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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I do have adenomyosis, which is giving me so much trouble on top of Lyme.
When the second gyn who didn't believe in chronic Lyme suggested Lupron, I knew that it was harmful for Lyme patients, but researched it online anyway.
I know it's not for me. Which leaves me only with the option of a hysterectomy.
I am worried because my Lyme fatigue and fevers, and neuro symptoms are not good as of now, and I didn't even schedule the surgery yet!
I am waiting for the last gyn who believes in chronic Lyme to confer with my Lyme doc about my case before I schedule anything.
But it seems inevitable. I might pm you if I have anything more personal to ask, and once I'm more specific about which procedure of hysterectomy woud be done on me.
Accepting your support and healing thoughts with thanks, Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Talktel, no hysterectomy isn't going to be an answer to healing lyme & co.(IMO) It will only eliminate the sx increased from female parts.
There is a body/brain connection and your brain will be confused about losing parts. Like people who have a gall bladder removed, but continue to experience pain in that area?????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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This is about getting rid of severe bleeding and uterine pain associated with adenomyosis. That condition just compounds all the symptoms I experience with Lyme (weakness, fevers and all my symptoms)
I can't stay on hormones for a long time, and it's stopping to work. So I am kind of out of options.
I am waiting for my LLD to have the final say.
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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massman
Unregistered
posted
OK - are males who have treated female hormone imbalances using organ support allowed to post ? Yet ?
Seems like all your docs are only aware of surgery + drugs. Most things related to uterine proliferation are due to too much estrogen.
So your docs think just cutting out parts that are affected will deal with the problem. But since most hormone organs "talk" to each other which of those glands are starting the wrong message ?
In your case if it is the adrenals, pituitary or hypothalamus, having a hysterectomy may not be effective. There are methods to figure out where the problem starts and help it heal naturally.
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I can definitely be in a perimenapausal state, but I apparently have what seems to be severe adenomyosis, (showing up on all tests) which I believe is a "structural" problem, involving the uterus, or rather uterine lining frowing into the wall etc..
I can- and will- ask my doctors about your interesting posited views.
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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massman
Unregistered
posted
Thx for the reply.
Your docs have probably been not taught other ways to deal with hormone problems. That has been my experience and is the reason why I started studying + treating lady patients with imbalances.
If you have seen / read the posts mentioning Dr. K here lately - I have studied / trained with a doc that does what Dr. K does, which is ART, an effective way to evaluate + deal with many types of health challenges.
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posted
I am an ultrasound technician specializing in OB/Gyn. I have personally never seen Lupron work as expected. It is sometimes given to shrink fibroids but I've never seen them shrink. I cannot speak for statistics or formal tests. I speak only from my own experience. ALL my (Lupron) patients have commented the difficult side affects.
I do not know how lyme disease would be affected by a hysterectomy. (I'm new to the lyme world).
However, I do know you should ask your doctor about a less invasive procedure called a Novasure endometrial ablation. This is a procedure done which burns away your endometrial lining (the tissue which builds up and sloughs off each menstrual cycle). This procedure is done to eliminate or control abnormal vaginal bleeding.
Theoretically, the procedure should totally eliminate your bleeding. However, it is not 100% effective in doing so. I forget what the statistics are: something like 85% of women has complete absence of bleeding following the procedure. Of the remaining women, most have decreased bleeding which means periods which are light or more "normal" at least. Some women have absolutely no relief and continue to bleed abnormally.
I've had the procedure myself as have several women I work with. We ALL found total relief. However, I have had patient within all post surgery categories. I have also had a few patients with post surgery complications like infection or increased pain. All surgeries have risks. The ablation is considered less risky than a hysterectomy. At least that is my understanding. For me, I decided to have the ablation and if it did not work I would then get the hysterectomy. I was anemic and close to needing a blood transfusion due to the amount of bleeding I was having prior to the ablation.
The ablation does not affect the ovaries, which will continue to release hormones. If your pain is related to endometriosis (abnormal growth of the endometrium outside the uterus), you will still have pain associated with hormonal stimulation of that endometrial tissue. However, you will not have vaginal bleeding.
An endometrial ablation does not treat endometriosis, which is treated with a laparoscopy. However, it is often successful in treating adenomyosis, which is a glandular derangement of the muscular tissue. (Sort of like the endometrial glands invade the normal muscular tissue of the uterus).
Personally, I feel you should speak with your doctor about the option of the endometrial ablation. If you are close to a "woman's hospital" go there. If not, find a good teaching hospital with a good women's health department. The success of the procedure and the lack of complications are directly related to the experience of the person performing the ablation.
(I am not a doctor. Nor am I representing my place of employment with this post. Please seek the advice of a qualified physician)
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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Gahagan, I know that endometial ablation possibly works for endometriosis. I have had that procedure twice in the past several years with somewhat iffy results.
That was before adenomyosis was detected in the last procedure two years ago.
And I get really severe cramps with bleeding, which I never previously had.
Ablation doesn't really work for adenomyosis, which in more internal inside the uterus. An ablation, I believe, just sloughs off the outer lining and doesn't get to the inner walls of the adenomyosis.
From what I've been reading, embolization is not an option neither for this problem. (more for fibroids)
Which is why the docs are recommending hysterectomy.
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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massman
Unregistered
posted
What the bottom line here seems to be is estrogen dominance. Too much estrogen compared to progesterone.
But there seems to be so much interest in cutting + burning tissue instead of helping organs make the correct amounts of hormones at the right times that I feel it may be time for me to peel out.
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Endometriosis is not treated with an endometrial ablation as the ablation deal only with the endometrium INSIDE the uterus.
Endometriosis is growth of the endometrial tissue OUTSIDE the uterus.
An endometrial ablation is done by first doing a D&C, which scrapes out the endometrial lining. However, with only a D&C the endometrium will grow back. The ablation burns the endometrium completely out to a level into the myometrium (uterine muscle).
Ablation DOES work for adenomyosis most of the time. However, sometime an adenomyosis resection is required. This would be a slightly more invasive procedure. http://www.wdxcyber.com/npain09.htm
I realize there are doctors who claim adenomyosis cannot be treated with an endometrial ablation. I'm telling you I KNOW different because I see the results in my patients.
Perhaps you had a D&C for endometritis, which is different.
If you had an endometrial ablation for endometriosis, you completely were hoodwinked. Endometriosis is treated with either OCP or surgically by laparoscopy.
There may, indeed, be a logical reason why your doctor believes you need a hysterectomy instead of an ablation. However, I have seen many women come to us for a second opinion about a hysterectomy who did not need one, recieved the ablation instead, which was successful in relieving the symptoms of abnormal bleeding.
In your original post you said "it seems I have no options other than a hysterectomy." I'm telling you one. But you replied by implying I am confused, which is insulting. I graciously gave of my time, and you didn't even bother to look into the facts or the information I provided.
Do what you want. Bleed. Don't bleed. Whatever. If you'd rather have the riskier surgery of a hysterectomy, go for it. I, however, chose the less invasive ablation and am glad I did.
MASSMAN: not all abnormal vaginal bleeding is due to hormonal issues. Many are structural issues such as leiomyomas or polyps.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
I did not mean to be insulting at all, and am very grateful to you for your time in responding.
I will indeed bring it up with my doc as to what you've suggested. If that would work, it would be great.
And I do thank you.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Shosty
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posted
I would say find a really special gyn. surgeon. There are probably alternatives to Lupron, and also alternatives to hysterectomy, for adenomyosis.
I can only say that thorough research brought a solution for our daughter's endometriosis, which was obstructing her digestive system. She was out of school for months. A yahoo forum introduced us to the concept of excision. I contacted some of the other parents or patients on the site, and we pursued surgery with a doctor in Maine who does excision, and trained under Dr. Redwine from the West Coast.
Endometriosis has been linked to Lyme, and also to autoimmune problems. I don't know about adenomyosis.
The controversies over treatment of endometriosis are similar to the controversies over Lyme treatment. It is another medical "war." Finding a good excisionist is like finding a good LLMD. If you PM me, I can give the name of our surgeon.
Again, I don't know if this is helpful to the poster, but it might help others with endometriosis. Our daughter has had two full years of total relief after surgery. Conventional surgery (cauterization) did nothing for her.
She also has been on bioidentical progesterone cream.
Hope this helps someone. Read up on excision (see Redwine's site) if that helps explain all this.
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massman
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posted
What induces the growth ? What induces the growth to bleed ?
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posted
I had a hyster (with removal of 1 ovary) a yr. before I was diag., but had Lyme for 13 yrs. or more. It was laparoscopic (sp).
I only had 1 ovary removed because I have FVL and cannot have hormonal therapy. The hematologist strongly suggested this. Good thing too, because my gyn was being a hard-head and wanted to remove both.
I didn't even think about the difficulty I had with it being related to Lyme until I read your post.
I had the hyster and a week later ended up in the hospital for a week of flagyl and something else, due to a pelvic abscess.
5 wks after that I had to get another surgery, because the adhesions were so bad I couldn't stand up or have a bm w/o great difficulty.
It took me a very long time to recover, but in the end I am glad I had it. I had endo, adeno., and fibroids.
Massman, Gahagan, I have made an appointment in two weeks with my gyn who is a surgeon as well, and am going to discuss everything everyone has posted.
He is a believer in chronic Lyme so that works in my favor too.
You have all been incredibly helpful, and I will discuss abelation again as opposed to hysterectomy and also ask about possible hormonal influences from different organs which may induce growth.
I thank you all so much for your input, Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Sorry to have come down on you so hard. I DO hope I was helpful and I apologize for being so quick to jump on you.
I've had a rough couple of days with my emotions. Feeling rather depressed....or angry. Kind of jumping between the two....and you happened to catch me at a bad moment.
Good luck with whatever treatment you decide is right for you. Oftentimes, there is no ONE RIGHT answer. Let's just hope that whatever you go with, it works, and you have no complications.
Sometimes it sux to be a woman.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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I am going to my gyn doc, who is a good teaching surgeon in a major medical facility, armed with all my posts from everyone.
He had mentioned abelation or hysterectomy for me. So I'll rehash the whole thing with him.
As for your emotions, I second the emotion! I am so grateful to all of you because I do not much support within my family, and my extended family of siblings think that I'm perfectly fine and my sx are all 'in my head'.
They don't believe me at all. I have stopped saying anything to them. Which is why this support group is so important.
Lyme does stink, doesn't it? And when additional medical problems come up, things do get quite messy.
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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massman
Unregistered
posted
What induces the growth ? What induces the growth to bleed ?
Chances are, the cause of this type of "growth" is not yet certain. Adenomyosis is basically endometriosis on the uterine surface. Endometriosis bleeds because the tissue that has grown elsewhere bleeds during menstruation, just as the tissue in the uterus does.
The site says that every treatment should be tried before hysterectomy.
Bioidentical progesterone cream can counteract the estrogen dominance/hormonal imbalance that can contribute to this.
Laser can be used. But I would try to find a good excisionist, because excision goes deeper and doesn't leave residual parts of the lesions. PM me if you want a name.
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massman
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posted
Thanks Shosty. I also found that link.
I am not a big fan of the cream. It can change symptoms but washes out the ability to test levels.
In fact if you are on the cream it "washes out" the ability to get accurate tests for hormone levels. If the organs are beyond repair we use sublingual pellets of progesterone.
With those you can accurately measure levels + especially ratios then fine tune doses if needed.
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posted
I don't have firsthand experience with this, but I was raised in a very alternative medicine focused household. Take this with a grain of salt, cause my family is very very left of center...
That said, growing up, I was always told that female problems of all kinds are realted to undiagnosed allergies, and especially food sensitivities, in most cases wheat or dairy. Can't help but think these might be issues with both the uterus and the lyme/general illness.
When people are as sick as the lyme population is,I find it are to imagine that anything could be "completely unrelated." It's all your body and as the old song goes, the uterus is connected to the shin bone...
I'd try a serious elimination diet for a few weeks and see whether anything changes, but that's just me. Also depends, of course,on how acute the situation already is.
Good luck!
Posts: 10 | From Brooklyn, NY | Registered: Nov 2009
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Shosty
Unregistered
posted
Comnpletely gluten and dairy free diet (and free of other allergens too) did not have any effect on endometriosis here. But it is true that most people with endometriosis (and adenomyosis would be included) do have food allergies, which is interesting.
One theory is that these problems are basically autoimmune, and those with autoimmune problems tend to have these allergies.
Who knows?!
Massman, thanks for the info on the pellets. Another problem is that the cream accumulates in body fat, and progesterone testing tends to be sky high after awhile!
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posted
Another theory is that intestinal inflammation leads to elevated cortisol in the area and this is estrogenic. Inflammation pushes the body toward increased estrogen production, because estrogen is needed for healing and regrowth. Estrogen excess increases, the growth of fibroid tumors and the lining of the uterus. When estrogen is high out of balance with progesterone, the lining is never fully shed and bleeding becomes excessive and tissue growth out of control.
Could try two weeks a month of Progest-E, natural progesterone and see what happens. Take it the two weeks before your period.
Trouble with a hysterectomy is that the uterus is in a feedback loop with the pituitary and adrenals and it messes up your hormones. Many times it will lead to thyroid and adrenal problems. Often DHEA will greatly decline. Also, the uterus produces very important prostaglandins that protect your vascular system and other tissues and keep them pliable. The incidence of cardiovascular disease greatly increases after it is removed. Also, one study showed that women with hysterectomies were on average up to 25% more overweight than those without - probably due to the thyroid/uterine connection.
Tish
Posts: 31 | From TX | Registered: Nov 2008
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Especially as my Lyme sx are pretty bad, and I think I need to speak to my LLMD sooner than my next appointment. I wonder if I need a change in regimen.
What happens if my Lyme sx are not stabilized and I do need to go ahead with whatever procedure has to be done?
As for progesterone, according to your views, I am on progesterone hormone already for some months, (to controle the female sx) so wouldn't it have some kind of effect on my body?
To reiterate, I cannot stay on progesterone indefinitely.
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
quote:Originally posted by Tish:
Trouble with a hysterectomy is that the uterus is in a feedback loop with the pituitary and adrenals and it messes up your hormones. Many times it will lead to thyroid and adrenal problems. Often DHEA will greatly decline. Also, the uterus produces very important prostaglandins that protect your vascular system and other tissues and keep them pliable. The incidence of cardiovascular disease greatly increases after it is removed. Also, one study showed that women with hysterectomies were on average up to 25% more overweight than those without - probably due to the thyroid/uterine connection.
Tish
These are excellent points, thank you for sharing this, Tish.
Talktel - you might add this to your info...
I developed thyroid problems (Hashimoto's Thyroiditis) 8 years after my hysterectomy, and the following year developed Addison's Disease (adrenal insufficiency).
My LLMD views both of those conditions as a result of long-term infection with Lyme and co. And I did, too.
But with this info... perhaps I was more likely to develop those issues having had the hyst and Lyme issues?
If that's the case, then depending on where you are re: Lyme and co may play a big factor in your decision to have the hyst.
However - I can still say that after all the many options I tried prior to the hyst... even with the longer recovery... I don't regret it.
Because I can truly say I tried all the available options, and left nothing un-tried before the hyst.
Since the hyst helped with symptom-relief, where nothing else did... I'm okay with it.
And, of course, the thyroid and adrenal issues are so common in Lyme patients that it may or may not be related to the hyst (although I suspect a connection because everything is so inter-connected).
-------------------- �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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posted
I'm asking Santa for a hysterectomy for Christmas
I'm with cactus. I think some of us gals are simply better off without a uterus, some may not be. My uterus will never be normal again, I have tried just about everything.
Posts: 50 | From Midwest | Registered: Nov 2009
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hiker53
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Member # 6046
posted
I had a partial hysterectomy several years ago in the middle of lyme. (left the ovaries in). had a fever for a few days afterwards and had I.V. antibiotics and oral flagyl. My doc gave me the flagyl to prevent the I.V. antibiotics from giving me C. dif. I herxed a little and it took me a long time to recover, but I don't regret the surgery at all (except for the ugly scar--cervix was scarred shut, so had go the abdominal slash method!). The doc believes the lyme caused the cervix to scar shut and caused my hormones to get out of whack--did have a uteral fibroid as well.
Anyway, not regrets on the surgery as my wonderful doc tried every hormone and method to stop the menstrual bleeding for over 6 months.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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glm1111
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posted
Parasites/worms induce the growth.
I almost died back in 1976 because of a cyst(parasite) that had burst on my right ovary and caused the peritonitis. I was lucky and only had to have my right tube and ovary removed and was able to keep my uterus and left ovary.
Of course I didn't realize I had undiagnosed Lyme disease.Spent 2 weeks in ICU. When we understand that most of us are infected with these parasites we can begin to heal.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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massman
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posted
Was asking Gahagan that question as she posted the info.
cactus
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Member # 7347
posted
massman - You could pm Gahagan with your question, not sure if she's still checking this thread.
Nice to see you back on the board.
You might want to let the many worried people know that you have not signed off forever. Many have responded to your "See ya" post.
-------------------- �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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