posted
Please go to the Vulvodynia website. this is a condition that is caused by all of these bugs. There are specialists that deal with this. Special diets and meds can help. A regular GYN cannot help.
Is this something I will always have to deal with?
Posts: 23 | From SouthEast | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Likely, it will get better. But it may take some time. There can be various causes for this.
You really need to talk to your LLMD about this regarding the neurological aspect (lyme inflames and damages nerves) & what other things might be going on. Ask if you need to see a (hopefully LL) gyn who specializes with vulvodynia issues or if they think this is the same pattern as in those with lyme who have had this. It is true, a regular gyn. is not going to be enough help.
The site above offers more detail, in general. Start there and then tallk to your LLMD for the next step. Believe me, this is not at all uncommon. You are not alone at all.
If you check past threads, there have been several on this very topic. Just search: vulvodynia -
Posts: 48021 | From Tree House | Registered: Jul 2007
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karenl
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posted
It can be from cpn also. Cpnhelp.org.
Posts: 1834 | From US | Registered: Oct 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
have you had the yeast cultured to make sure it is indeed yeast you are dealing with?
I agree with the others it sounds like vulvodynia, or possibly pelvic floor dysfunction.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
We have an LLMD in CA that specializes in this, amongst the rest of it. You can pm me if you want.
If you have tight pelvic muscles and can tolerate pool water, I stretched all the muscles out in a pool over nine months's time, before I found out this was due to Lyme. Stretching them relieved the pain in the area.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
What about interstitial cystitis...does that go along with this? I have been experiencing burning when urinating, but did not think much about it. Could this also cause stomach burning?
Do I need a seperate doctor or can one MD treat both problems?
I am in TN, so will have to find a doctor.
Posts: 23 | From SouthEast | Registered: Jun 2010
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posted
The burning while urinating should get better with treatment of Lyme and it's confections. I did start with enablex and neurotin. The pain while urinating was unbearable. I never fully emptied my bladder. Had the terrible urodynamics ? Test and I was not emptying it. It is so much better with treatment. I'm still on neurotin , but no enablex. Do you have neuropathy as well. I had it in my pelvic area. It was numb and then had a burning terrible sensation. It was hard to stand at times.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
My best friend has this issue and it is called vaginismus
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
If it is from candida, I got rid of mine recently with Diflucan, Solaray Yeast Cleanse, grapefruit seed extract and Garlinase garlic pills, and drastically reducing my carbs to almost nothing outside of meat, eggs, nuts, vegetables and a little high fiber fruit like strawberries.
My candida gave me a lot of itching, burning irritation and a feeling like I had a bunch of tiny cuts there--sometimes they even bled a little.
There could be other causes for your problem, but since you say you've already been battling candida, it may be that it just isn't gone yet.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
What kind of doctor do I need to see for the correct diagnosis? Will a doctor who evaluates interstitial cystitis recognize pelvic floor problems and vulvodynia?
Could be bladder problems and vulvodynia or pelvic problems. I think I have some yeast issues but think the impossible intercourse is related to something more serious.
Posts: 23 | From SouthEast | Registered: Jun 2010
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quote:Originally posted by gatorade girl: The burning while urinating should get better with treatment of Lyme and it's confections. I did start with enablex and neurotin. The pain while urinating was unbearable. I never fully emptied my bladder. Had the terrible urodynamics ? Test and I was not emptying it. It is so much better with treatment. I'm still on neurotin , but no enablex. Do you have neuropathy as well. I had it in my pelvic area. It was numb and then had a burning terrible sensation. It was hard to stand at times.
I do have neuropathy in the palvic area and stomach.
Posts: 23 | From SouthEast | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Neuropathy is very common with lyme. Be sure to PM Robin123 for: LLMD in CA that specializes in this.
You can call their office and maybe they can schedule an informational phone appointment with you - or guide you to others who have similar knowledge.
Maybe they could send you some literature or links - and they may be able to consult with your LLMD about this.
I would surely want to find out more from any LLMD who specialized in vulvodynia. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by BrighterDays: I cannot have intercourse because it is so painful. I have been to gyno and had PAP, biopsy, etc. Nothing was found.
I seem to always be dealing with yeast. Even after taking Diflucan for a month, the problem still persists. I have used yeast creams, etc.
The most recent attempt at sex was very painful with some external bleeding. I am not talking about a little pain. I cannot tolerate sex.
Anyone else experience this? What could be the problem?
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I know what you are going through!!! I had the same thing, before I had Lyme. There is a condition called Lichen Shlerosus...it sounds very, very much like it. Because your immune system is down, it could be the cause. There is a link to LS with low Vitamin D & thyroid.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I had the same problem. Went to gyno and culture came back yeast and bacterial vaginitis. She said to take flagyl, which I asked for tindamax instead. Once finished with tindamax then take diflucan. Since taking them I haven't had a problem.
Posts: 17 | From woolwich twp nj | Registered: Sep 2007
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posted
For the yeast issue...are you taking probiotics as a part of your treatment? Just want to make sure since you definitely need to be taking good quality probiotics.
I really hope that you can find a good doctor to help you with all of this. I would definitely discuss it with your LLMD.
Your LLMD may be able to help or at least may know of good specialists in that area.
I am sure some of their other lyme patients have the same problems so they may know of some good doctors that can help if they can't.
Take Care!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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WildCondor
Unregistered
posted
Have you had an ultrasound of the pelvis and abdomen?
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quote:Originally posted by WildCondor: Have you had an ultrasound of the pelvis and abdomen?
No. Thanks for the input. I know I need to do this, just trying to find a doctor.
I don't know whether to call my regular gyno, find a urologist, or gynourologist. I am leaning towards the gynourologist, but office said I need a referral. My insurance don't require it, but their office does.
If I call my gyno, he will probably eval me again. I did not realize my bladder was involved until recently. I did talk to him about the extreme pain with sex on my last visit (6 weeks ago), but he said yeast doesn't usually cause this but probably was in my case.
Can he really help with bladder, vulvar, and maybe pelvic floor pain?
Posts: 23 | From SouthEast | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "Can he really help with bladder, vulvar, and maybe pelvic floor pain?"
Probably not. You said in your first post about this doctor:
" I have been to gyno and had PAP, biopsy, etc. Nothing was found."
Most gyns do not know about vulvodynia. That he did not even tell you about this term indicates he is clueless in this area. So, why go back to him?
Talk first to your LLMD. If your LLMD has no suggestion for a specialist, Find a gyn who specializes in vulvodynia to examine you. It would be best if they were also LL.
The LLMD in California who specializes in vulvodynia would be my first call. They tend to know other doctors around the country who also deal with their areas of specialties.
The bladder / urethra is often also involved. A doctor who is skilled regarding vulvodynia issues will know all about that. However, a LL one would have a far better knowledge base for a lyme patient.
And, your LLMD really should be informed that you are dealing with this. It's very important information for many reasons. It may change your lyme treatment.
Just a guess, might you also have a burning mouth?
Be sure to read all links and features at the http://www.nva.org site that sk8ter posted. It's a fabulous resource and will answer many questions. There are some video clips there, too.
New contact number (different from website): 301-949-5114
Normally, they ask a membership fee to get list, however, you can contact them if that is a hardship. I just asked. I think such things should be free but they do have to pay their costs of the website, phone lines, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Other groups to help locate a doctor: -------------
Medical Directory - lists many doctors, worldwide -
Posts: 48021 | From Tree House | Registered: Jul 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
there arent too many "one stop shops" around meaning one medical clinic that you can have all three treated. Most likely the urologist wont know how to treat the vulvodynia and pelvic floor dysfunction-
you could luck out and get a urologist that does know about PFD-
I would check with the NVA for a vulvodynia specialist in your area.
if you use facebook the ICA has a page on there and you could post looking for a Dr in your area too.
quote:Originally posted by BrighterDays: What kind of doctor do I need to see for the correct diagnosis? Will a doctor who evaluates interstitial cystitis recognize pelvic floor problems and vulvodynia?
Could be bladder problems and vulvodynia or pelvic problems. I think I have some yeast issues but think the impossible intercourse is related to something more serious.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Some of us in treatment have severe pains in rectum and vaginal.
Sometimes I think it is when I am hitting them the hardest---
when they let go of the nerves pain is increased...Then it gets a lot better....Most docs do not understand this.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Most gynos are not too familiar with vulvodynia, but some are. There is a very experienced doc in DC who treats vulvodynia...Dr. Stanley Marinoff. However, it is unlikely that he is lyme literate and would even make the connection. See: http://www.cvvd.org/
But you might see a vulvodynia specialist just to see if it is yeast or something else causing it. I believe it is linked to lyme or other infections that flare when lyme is involved, because mine started when I had suspicious fevers and muscle aches 20 years ago.
I am trying an herbal supp called Essential Detox (Badmaev) which was apparently formulated to kill HPV. Some think that HPV could be associated with vulvodynia. My EDS practiioner found that I have that virus, so we are trying this treatment.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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quote:Originally posted by Keebler: - Q: "Can he really help with bladder, vulvar, and maybe pelvic floor pain?"
Probably not. You said in your first post about this doctor:
" I have been to gyno and had PAP, biopsy, etc. Nothing was found."
Most gyns do not know about vulvodynia. That he did not even tell you about this term indicates he is clueless in this area. So, why go back to him?
Talk first to your LLMD. If your LLMD has no suggestion for a specialist, Find a gyn who specializes in vulvodynia to examine you. It would be best if they were also LL.
The LLMD in California who specializes in vulvodynia would be my first call. They tend to know other doctors around the country who also deal with their areas of specialties.
The bladder / urethra is often also involved. A doctor who is skilled regarding vulvodynia issues will know all about that. However, a LL one would have a far better knowledge base for a lyme patient.
And, your LLMD really should be informed that you are dealing with this. It's very important information for many reasons. It may change your lyme treatment.
Just a guess, might you also have a burning mouth?
Be sure to read all links and features at the http://www.nva.org site that sk8ter posted. It's a fabulous resource and will answer many questions. There are some video clips there, too.
New contact number (different from website): 301-949-5114
Normally, they ask a membership fee to get list, however, you can contact them if that is a hardship. I just asked. I think such things should be free but they do have to pay their costs of the website, phone lines, etc. -
Fact is, I don't know if I have vulvodynia or not.
No burning mouth.
I travel 8 hours to LLMD and no LL gyno anywhere close.
I will check the websites you suggested.
Thanks
Posts: 23 | From SouthEast | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Based on what you are saying, I think seeing a vulvodynia specialist is the best bet, even if they are not lyme literate. At least you will get a diagnosis.
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Forgot to add. Soaking in a hot tub stopped my rectal spasms...Talk about hurt.
Its feels like a strangulated hemorrhoid all the way to the belly button...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Important tips to prevent Vulvodynia or ease pain:
-Eat healthy diet -Wear dresses and go without panties whenever possible. Never wear panties to bed. -Never use Always products -Use non-toxic laundry detergent -double rinse(most "free & clear" have MANY chemicals) -No soap "down there". period. -Use non toxic personal products - shampoos, soaps, feminie hygiene, lotions, etc. -White cotton undies only
Unfortunately I have five years of experience with V. Pain.....
Posts: 1761 | From USA | Registered: May 2006
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mojo
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by LightAtTheEnd: If it is from candida, I got rid of mine recently with Diflucan, Solaray Yeast Cleanse, grapefruit seed extract and Garlinase garlic pills, and drastically reducing my carbs to almost nothing outside of meat, eggs, nuts, vegetables and a little high fiber fruit like strawberries.
My candida gave me a lot of itching, burning irritation and a feeling like I had a bunch of tiny cuts there--sometimes they even bled a little.
There could be other causes for your problem, but since you say you've already been battling candida, it may be that it just isn't gone yet.
Oftentimes tiny cuts can be Lichen Sclerosis which is very treatable with topical steroids.
Posts: 1761 | From USA | Registered: May 2006
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posted
Mojo just out of curiosity...what are in always products? Thanks.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Always pads and panty liners - several studies in the U.S. and Canada show they contain toxins and can actually cause Vulvodynia.
BTW - I wore Always panti liners almost daily before I got V Pain so it may have contributed.
Posts: 1761 | From USA | Registered: May 2006
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posted
gatorade girl, i was going to ask the same thing, you beat me to it! i usually buy carefree pantyliners but last month i bought always pantyliners b/c they were on sale. i noticed the symptoms were much worse so there is definitely something to this mojo! what's about tampons and pads? any info about that?
tampax seem to be fine for me but if i use a different brand my symptoms are worse. when i need to use a pad, i use stayfree but nothing with dry weave, it makes it worse for me too.
i'm glad that you decided to bring this up brighter days because it's something i've been suffering with too! my regular gyno never found anything wrong (not that she looked really hard either).
thanks for the link keebler, i'm very pleased to see a few in IL. i'm definitely going to make an appointment today!
Posts: 95 | From IL | Registered: Jun 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I try to use only Natracare tampons. Pads are out because I can't have anything close to my skin anymore. I do use unscented tampax for the super small size, though.
Unbelieveable how many of us are affected by this!
Another thing I should have mentioned is that dryer sheets are very very bad. I don't even allow them in my house anymore! They are bad for your skin overall and very bad for the dryer.
Posts: 1761 | From USA | Registered: May 2006
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posted
Thank you so much. I just bought always too bc they were on sale. That is good to know. I appreciate all your help. I would ask about neurotin bc I think it helped me have relief.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I wore always too- even had a reaction years ago to the scented ones(remember those) at my first appt at the clinic i went to they told me three times to never wear Always pads- they said one woman actually had the imprint of the pad on her skin from them.
It is too bad we couldnt all sue the makers of ALways- if this is indeed the cause of this!!
Seventh generation has great pads that dont irritate- you can get them online at vitacost
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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WildCondor
Unregistered
posted
Before you scare yourself and speculate wildly get a full workup by your OB/GYN and see what they find, if anything. Cysts can cause pain like that during sex as well.
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tick battler
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Member # 21113
posted
I have had an infected cyst there and the pain is very different from vulvodynia pain. The cyst was more of an aching pain in the area of the infection. The other pain is burning all over that waxes and wanes. More like a bad yeast infection.
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
The external bleeding is a clue, also.
If you don't get results from the urologist - a dermatolgist or OB/Gyn familiar with V Pain would be very helpful. It could be something as simple as Lichen Sclerosis which is very treatable.
Posts: 1761 | From USA | Registered: May 2006
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posted
www.scdiet.org. Anti yeast diet. works wonders.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree Tick battler- pain from a cyst is much different from that horrible burn of vulvodynia.
I have found that mine is mostly referred pain from the pelvic floor muscles.
Just curious what do all of your LLMD's feel this is and how do they treat it?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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mojo
Frequent Contributor (1K+ posts)
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posted
My LLMD pretty much went with what I told him and then did his own research and keeps his eyes open for possible specialists.
He sent me to one guy that does Frequency Specific Microcurrent and that heals many V pain patients. This Dr. (who is now my reg OB/Gyn) discovered that my tailbone points way to the left and has moved it to it's proper place several times - but it keeps going back! It's been that way much longer than it's been in the right place (I remember when I injured it as a teen) so I can see why it wants to stay out of place. I went for many years without pain while it was out of place - I think due to my sitting wrong (because of the pain) the tailbone issue caused other pains in my glutes and down the back of my thighs.
I am now seeing a D.O. that does 'manipulative therapy' and my body feels like it's in it's correct 'place' now so I may try him again.
A couple of years ago Dr. M, a CA OB/Gyn that also treats Lyme Diseast spoke at the ILAD's conference on Vulvodynia and Lyme and he went to that session and gave me all the notes.
Posts: 1761 | From USA | Registered: May 2006
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posted
I definitely think the link between Lymes/co-infections and vulvodynia is possible... I struggled with vulvodynia for 2 years prior to a diagnosis for Lyme's. I took doxycycline for a few weeks and the pain increased so excruciatingly I thought it had to be the antibiotics causing yeast problems/side effects. However, when I went off the antibiotics and started a herbal regimen for the Lyme's... Samento and VFT, the pain came back just as horribly... and these herbs don't usually cause yeast issues as they don't wipe out good bacteria. So I think that there can be a link between the increase of inflammation/herx with antibiotics and the vulvar symptoms. Definitely try to find a doc who understands the gynecological link if possible - I think there's a good chance it's related to the Lyme's.
Posts: 4 | From MD | Registered: Aug 2009
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posted
Also keep in mind that Lyme's often has effects on the endocrine system... which can drastically affect your sex hormones (estrogen/progesterone/testosterone) which has in many cases caused vulvar issues for women. It might help to get those hormone levels screened to see if Lymes is affecting them, you may be able to supplement.
As a previous poster mentioned, Vitamin D has also been linked to vulvar pain and that's almost always deficient in Lymes disease patients... so you should already be supplementing with those.
It sucks because Lymes Disease can affect so many systems in your body it's hard to tell what is going haywire to cause your symptoms... but hopefully, as antibiotic treatment progresses... things will start to normalize.
Posts: 4 | From MD | Registered: Aug 2009
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