Interstitial cystitis, labial atrophy, likens sclerosis, low estrogen estrogen dominance? Anyone...

[Deir]

 sigh.......I was recently a healthy, attractive, pretty happy mom and wife. In the past month, I have developed interstital cystitis which is non infectious but feels like a 24hr UTI. I went to a pelvic/urology specialist and they want me to have a biopsy of my vulva which is showing signs of atrophy (!!!!) and possibly Liken sclerosis- a freaky skin disorder that causes miserable itchiness. Both IC and Likens are thought to be autoimmune disorders.I apparently have low estrogen which is causing the atrophy (again I say !!!!!!!). I also tend towards estrogen dominance/low progesterone. Ugh. I am feeling like an old messed up person. Trying to stay positive.

Anyway-  there are many important details I am leaving out but at first glance- anyone have any bright ideas?

I am starting my nettle infusions tomorrow.

[Panserbjorne]

sorry, mama.  there are many avenues you can try, its just a matter of finding one that resonates with you.  Lichen sclerosis and IC have been managed by all different modalities.  I won't say there's one that's consistently effective for all people, but that's par for the course in natural medicine/nutrition.  best of luck on your journey!

[A&A]

I was told I had IC and suffered for a long time.  Then I happened to take an antibiotic for a dental infection, and my "IC" went away.  It must have been an infection, after all.

[GoBecGo]

I have LS (honestly it doesn't itch or bother me at all, it's just a slightly differently textured skin, and it didn't tear more or less when i gave birth) and also sometimes get pompholyx eczema attacks on my palms and the soles of my feet.  I have hashimotos thyroiditis.  Have you had your thyroid tested?  When mine is having an attack i tend to get the eczema and when the attack is winding up the LS retreats a mm or 5.

[Deir]

Originally Posted by A&A 

I was told I had IC and suffered for a long time.  Then I happened to take an antibiotic for a dental infection, and my "IC" went away.  It must have been an infection, after all.

Had you had a  negative culture?

[Deir]

Originally Posted by GoBecGo 

I have LS (honestly it doesn't itch or bother me at all, it's just a slightly differently textured skin, and it didn't tear more or less when i gave birth) and also sometimes get pompholyx eczema attacks on my palms and the soles of my feet.  I have hashimotos thyroiditis.  Have you had your thyroid tested?  When mine is having an attack i tend to get the eczema and when the attack is winding up the LS retreats a mm or 5.

They took blood on thurs to tet my thyroid but i have never had any thyroid symptoms (I don't think)

[nukuspot]

I randomly just found your post.  I have had IC for 7 years.  Wow, it's been a long time.  Over the years I have developed a lifestyle and modified my diet and gotten the IC to a point where it is livable.  I actually went into a 20 month remission after childbirth.  SO hang in there.  Like all autoimmune diseases it can have flares and remissions.  I do want to say that diet is a really, REALLY important factor in managing IC.  Please google "Intersitial Cystitis Network" and look on their website.  They have many great diet resource guides that can help you on your way to getting your pain level down.  I totally know what you are going through.  The first years are the worst, getting diagnosed, then trying to figure out what are your personal flare triggers.  But you will get past it and learn to live with IC.  It's a terrible disease but it can be managed.

[ASusan]

I can't comment on the IC, but I did once have a dx of lichen sclerosis, and my OB told me that I have "the genitals of a 50-yr-old post-menopausal woman." (this in reference to my atrophy at my 3-month post-partum apt.) He told me I would not get better without using graduated cylinders. He had never seen genitalia as atrophied as mine, and he had recommended graduated cylinders only a couple of times before, but he thought I absolutely would not have comfortable sex ever again unless I used them. I never went back to him.

I had acupuncture (and Chinese herbs), weekly for 6 months, which cleared the lichen sclerosis (any my lupus and helped get me pregnant - the lichen sclerosis wasn't the primary reason I did acupuncture).

Are you still nursing? Once I stopped nursing (night weaned, actually), my genitalia much improved and sex got MUCH more comfortable. My new midwife says my genitalia look normal - not atrophied. And I never used the graduated cylinders.

You might look up posts by JaneS. I think she had IC and beat it with dietary changes.

[Deir]

 ASusan- thanks- I haven't actually been diagnosed with this yet but the Urologist thought it looked suspicious. I have had no pain during sex- only itching. All these things issues started at once so I am assuming it is hormonal. yes I am still nursing but the weird thing is it all started the week I got my pd back for the 1st time which would usually be an idication that hormones were regulating. So confusing. Anyway- I totally appreciate your imput. I am going to acupuncture weekly right now.

Nukuspot- Your post similtaneously helps me and makes me freak out. 7 years! I have been checking out the ICN for months now and I have been doing the IC diet as well. I also suspect a salicylate sensititvity so unfortunately I am not eating those foods either. I am also taking Cystoprotek, colostrum, MSM, fish oil. and using estrogen cream.I definitely have a mild case compared to some of what i have read. My symptoms are- never feelinglike my bladder is empty (and therefore frequency) and burning in the bladder. Bad days are pretty bad. Like I feel like I will go nuts if the feeling isn't relieved but I have many days that are more manageable. Mentally I am struggling. The worst part is I am afraid my sex life is over. My dh and I have a great relationship and this part of our life has always been so important. We started dating in high school  (we're talking 21 years)and I 've always said we have, "chemistry" I am so sad and scared about this. Can you tell me whatyou mean by manage? Do you have discomfort/pain on a daily basis? What were/are your symptoms? I appreciate you reading and taking time to write- I am in a scared place right now.

[ASusan]

I just re-read my post - and it's totally confusing, esp w/ respect to timeline. Here's a timeline:

1. weird symptoms that later turned out to get a lupus dx.

2. suspected lichen sclerosis dx & bad reaction to  lupus meds.

3. weekly acupuncture & chinese herbs to regulate cycle & take care of lupus symptoms. The acupuncture also happened to address the lichen sclerosis,  which I think was related, in part, to cycling between yeast and bacterial infections AND out-of-whack hormones. So, there was some itching involved. I will say that once I discovered using garlic suppositories for yeast, I've not had any problems with yeast/bacteria. Treating yeast with OTCs and the itching with some sort of (steroid?) cream provided by the GYN was making me cycle back and forth between yeast and bacteria. for months.

3. 2 miscarriages

4. successful pregnancy

5. breastfed DS

6.. Atrophied genitals

7. Cycles returned at 28 months (at a time when nursing went down & DS was somewhat night-weaned). I think my hormones somewhat regulated at this point and sex became more comfortable.

8. midwife visit at 34 mos. Normal genitalia.

So, the acupuncture didn't address the atrophied genitalia, BUT, if you go to a good acupuncturist, they will address hormone regulation, which should address the atrophy.

[Deir]

 Thanks! I should also add that i believe the atrophy and IC are related. The possible LS is a whole other issue BUT it is autoimmune a d since sometimes IC is autoimmune- they could be related. I'm so glad acupuncture helped you so much. That is great. The weird thing for me is that these symptoms started when cycles started. I tend to be better hormonally (skin, mood) when I am pg amenorreac from nursing. Thanks so much!!

[nukuspot]

I REPLIED IN ALL CAPS TO HELP MAKE SURE I ANSWERED ALL YOUR QUESTIONS BELOW:

Nukuspot- Your post similtaneously helps me and makes me freak out. 7 years! I   UNFORTUNATELY THERE IS NO CURE FOR IC.  IT'S A PART OF ME NOW, BUT LIKE I SAID, IT HAS BECOME MANAGEABLE.  have been checking out the ICN for months now and I have been doing the IC diet as well. GOOD!  THE IC DIET IS TRULY HELPFUL.  THERE IS ALOT OF CRAP JUNK FOODS UNDER THE "SAFE" FOODS, SO FEEL FREE TO EXPERIMENT WITH WHOLEFOOD SUBSTITUTES.  ALSO, EACH PERSON WITH IC IS A LITTLE UNIQUE AND SOME PEOPLE CAN EAT THINGS THAT OTHERS CAN'T.  ONCE YOUR SYMPTOMS GET TO A BASELINE, START KEEPING A FOOD JOURNAL AND EXPERIMENTING.  FOR EXAMPLE, I CAN'T EAT THINGS LIKE BANANAS OR AVOCADOES WITHOUT A FLARE, BUT I CAN EAT PEACHES AND PLUMS AND BERRIES, WHICH OTHER PEOPLE WITH IC SAY THEY CAN'T TOLERATE.  I also suspect a salicylate sensititvity so unfortunately I am not eating those foods either. I am also taking Cystoprotek, colostrum, MSM, fish oil. I TRIED ALL THESE THINGS TOO (AND MORE) OVER THE YEARS.  I HOPE THEY HELP!  and using estrogen cream.I definitely have a mild case compared to some of what i have read. THAT'S GREAT.  THERE ARE SOME SCARY STORIES OUT THERE AND I THINK FOR THE MOST PART MANY IC SUFFERERS DON'T HAVE IT AS BAD AS SOME OF THE POSTERS ON THE ICN.  My symptoms are- never feelinglike my bladder is empty (and therefore frequency) and burning in the bladder. ME TOO, AND PRESSURE/PAIN, ALSO BURNING IN THE URETHRA (ALL DURING A FLARE).  IN NORMAL NON-FLARE DAYS I HAVE MILD FREQUENCY/URGENCY BUT NO PAIN/PRESSURE.  Bad days are pretty bad. Like I feel like I will go nuts if the feeling isn't relieved but I have many days that are more manageable. THAT'S TYPICAL OF IC.  Mentally I am struggling. The worst part is I am afraid my sex life is over. My dh and I have a great relationship and this part of our life has always been so important. We started dating in high school  (we're talking 21 years)and I 've always said we have, "chemistry" I am so sad and scared about this. THIS IS HARD...SEX CAN CAUSE A FLARE WITH ME, SO I DO IT MUCH LESS THAN BEFORE MY IC STARTED.  BUT THERE ARE WAYS TO MAKE IT EASIER, USING A HEATING PAD RIGHT AFTER SEX AND/OR TAKING A HOT SHOWER SEEMS TO HELP ME.  Can you tell me whatyou mean by manage? AFTER 7 YEARS I KNOW WHAT FLARES ME UP SO I AVOID THESE TRIGGERS AND USUALLY HAVE A STABLE BASELINE LEVEL OF IC WHICH I CAN LIVE WITH.  I USED TO TAKE ELMIRON BUT STOPPED WHEN I GOT PREGNANT AND HAVE NOT HAD TO RESTART IT AGAIN, I AM DOING WELL ENOUGH AT THE MOMENT TO NOT NEED MEDS, PLUS I'M BREASTFEEDING SO I WOULDN'T WANT TO TAKE THEM ANYWAY,  Do you have discomfort/pain on a daily basis? I HAVE LOW LEVEL DISCOMFORT BUT NO PAIN.  I HAD A 20 MONTH TOTAL REMISSION AFTER CHILDBIRTH WHERE I HAD NO SYMPTOMS AT ALL, BUT NOW I AM BACK IN MY LOW LEVEL BASELINE.  What were/are your symptoms? I THINK I ANSWERED THIS EARLIER.  I appreciate you reading and taking time to write- I am in a scared place right now.  I TOTALLY UNDERSTAND...I FELT SO SCARED FOR THE FIRST FEW YEARS UNTIL I GOT IT UNDER CONTROL, WHEN I FLARE I STILL GET SCARED ACTUALLY THAT IT IS NEVER GOING TO GET BETTER.  PLEASE PM ME ANYTIME IF YOU HAVE MORE QUESTIONS.