Back from Dr. Moldwin

[autoimmune]

Hi Everyone

First off I want to thank everyone for posting and sharing - it has been a huge help reading everyone's experiences.

I have a long story to share and if it can help anyone or if anyone has suggestions it would be nice to hear from you. I am 27 years old and a mother of three kids.

Back in December 2008 I woke up in terrible pain and when I saw blood in the toilet I assumed it was my period coming early. It literally took me a half a day to figure out that all that blood was in my urine - (that's how red my urine was!!!)

My gynecologist prescribed cipro......ten days later when I still had symptoms he prescribed Macrobid.....when I was still feeling pressure and complaining of frequency he sent me to a urologist.

That urologist preformed a cyscotopy (freaking killed!) and told me everything is basically ok but I do see a slight inflammation of urethra - go on bactrim for 30 days.

Eventually the pain subsided....but for some reason I was still left with all this frequency! 24 times - and that was just in the daytime!

I made my rounds (I live in NY) and finally found a urologist I liked and she told me to immediately get off of hormonal birth control pills - because the bladder is very sensitive to hormones. (this made a ton of sense to me because I had just started a new birth control pill a month before this bad uti)

Because of the frequency I was also put on Detrol.

Within a month my frequency was cut in half and I was not waking up at night.

eventually my frequency crept up again....we tried a higher dose of detrol switched to vesicare (which i didtn tolerate because of headaches) but nothing helped.....I started pelvic floor therapy to "retrain" my bladder - I went for two months - and was VERY dissapointed. The therapist really did not know what to do with me.....and was treating me as if I was incontinent - which I wasnt and telling me to visualize I was on a beach everytime I sat on the tiolet - and I would like to stress that at this point my probelem was ONLY frequency - not pain

I eventually quit therapy - at the same time I was diagnosed with HASHIMOTO disease and PCOS

I was very convinced that either the thyroid or hormonal imbalance was connected to urinary frequency - but as you all know the thyroid endo specializes in thyroid and the reproductive endo specializes in hormones and they all shook their heads at me when I bought up urinary freq

long story short.....I got synthroid for my thyroid....I started menstruating again and was able to get pregnant.....

For 9 months of pregnancy I thought I was cured. I was going way less then when I was not pregnant! I gave birth 10/10/10 to a healthy baby girl!

Then a month after I thought I had a UTI - which came back negative - I went every week for three weeks - it was still negative.

By my checkup they discovered I had vaginitis - I treated it - it did help pain a little bit but not much. I felt pressure and had frequency like crazy.

So here we are now my baby is 5.5 months. I have terrible frequency, pressure and worst of all sex hurts while I am with my husband and for days after.

So the first thing I did was contact my urologist - who said we know you are very sensitive to hormones - when you are ready to stop nursing and stop the micronor (progesterone only pill for nursing women) then come over and I will examine you - basically saying that nursing supresses hormones and your bladder is very sensitive. Also, reason I felt so good when I was pregnant is because body is awash in hormones. She also suggested that if sex hurts to start using a little ESTRACE.

So I started estrace....and it did help a little.....but then I got terrible pain.....

at this point....I went for a second opinion.

This doctor discovered that I had a whopper UTI (was it from using estrace - I dont know? he seemed to think it was from when I gave birth and was catherized although why it didnt show up till now is beyond me!!)

So again I went on antiboitics - a week later there was still pain

According to his examination I have Vulvodynia, vestibulus?, and Pelvic Floor dysfunction - I should start Pelvic Floor therapy, take elavil and atarax

This was two weeks ago

Last week was my appointment with Dr Moldwin (which I booked two months ago)

According to Dr. Moldwin I have Pelvic Floor dysfunction (muscles spasms)

I should make sure not to strain, take hot baths and start VALIUM

he also said that It cud be there is an underlying bladder issue but first have to deal with Pelvic muscles. (I also seem to think there is an underlying bladder issue because the whole pain thing is new.....before preg it was just frequency - i think my pelvic floor got messed up from all the utis and freq)

So that is where I am holding right now -

I booked my physical therapy with Gopi at brooklynhealthpt

I am desperately trying to wean my baby so I can start Valium

and now I hit a problem.

what birth control to go on? Hormonal bc pills seem to be a big no-no for me. condoms are not an option

will an iud hurt me if I have Pelvic Floor dysfunction - will it do more harm than good????

Please if somebody has experience with IUD - help me out here!!

each doctor says something else....one says its ok - one says dont even go near that area

I would also love to hear from anyone who has thyroid disease (by dr. moldwin appt - he said you know this week I have seen so many patients with hashimotos!!)

and if you have PCOS - please be in touch as well.

Please respond....and thanks so much for reading my post

[suzannes]

I was dx with thyroid dz in 1997 on synthroid since. I also developed type 2 Diabetes in 2008, which is odd because I am thin, ate well and exercised every day. My Ic started out of the blue in 2009, I think all of this is autoimmune related.

I had both types of IUDs. Bled a lot on the copper , loved MIrena, had mirena put in in 2003. Had mirena removed in 2010 thinking maybe it was causing IC, did not help with pain. Don't need BC now because I am menopausal. I will tell you that PT has helped me quite a bit.

Suzanne

[sailawaygrl]

Hello and welcome to the ICN.

It looks as if you have been around the block with the Dr's. Glad that you got to see Dr Moldwin and are scheduled for physical therapy. PT has been great for a lot of patients and especially PFD. Sounds as if you are on the right track.

I use the pill but not for BC but for PCOS. I was diagnosed with it when I was 18 yrs old. I am insulin resistant due to the PCOS and take metformin in order to make sure my body uses insulin correctly. I have had great results with that and rarely even think about PCOS anymore. What exactly were you looking for from someone with PCOS?

I know that we have other members with hashimotos and I am sure they will respond as well.

As for the Valium, I find that it helps my pfd a lot. I use the Valium suppositories and they work wonderfully. I hope you are able to start using the Valium soon.

Warm baths can help with the tight muscles while you are waiting for medication and PT.

Once again, welcome to the ICN.

Wishing you good days ahead,
Sandra

[ICNDonna]

I'd just like to say to the IC Network. You are very fortunate to be able to see Dr. Moldwin. He is well known in the IC community --- do you have his book? If not, it's a very good resource.

Warm healing thoughts,
Donna

[ginaaa22]

I was told that I had PCOS. But I believe I dont. That diagnosis is a catch all to me. My dr told me I am the smallest person with PCOS. I only weight about 170 lbs.


I have had my fair share of trying all types of bc. I have taken hormonal pills, nuvaring, depo provera and now the IUD. My IUD is great. I got it in aug 10 and I dont have a period anymore. When I would have my period I could never wear tampons because they hurt too bad and pads irritated down there. I do have vulvodynia. I have always had heavy, painful periods with no endo so the IUD is helping. When I'm supposed to be on my period I still do have some cramps and pelvic pain but not like before. I have mirena. My dr said that even though it has hormones it is localized and it will not be in the bloodstream. Its mechanism of action is different than pills taken by mouth. It did hurt to get it put in. If you do I would take something for pain before hand. I had some discomfort the first couple of days but it is getting better now. I'm not getting mine taken out. You can also try and schedual an apt with a reproductive endo to see if they can help you. If you have any questions dont hesitate to ask, I've been through it all when it comes to BC

[autoimmune]

Thank you EVERYONE for responding!

It is so nice to have a community to turn to.

My interest in pcos and hashimotos is as related to bladder issues. In my case they all happened at the same time and I DONT believe it is a coincidence.

The problem is that each doctor specializes in their own thing and nobody is looking at me as a whole. It is very frustrating.....what came first? did hashimotos mess up my hormones which made me get pcos....did pcos mess up my hormones which messed up my thyroid....where does all of these urinary problems fit in....they all happened at same time so they have to be connected!

ginaaa22 - your pcos story interests me.....because I also believe I dont have pcos - i had 3 children no problem - and am pretty skinny (- my only issue was adult acne....) they diagnosed me with pcos based on my testosterone being very high -

In regards to the IUD - I originally was leaning towards the copper one because I was scared of hormones but have heard from the gynecologist that the hormone one circulates hormones locally - so im glad to hear your doctor agrees

Do you have PFD or IC? Did putting the IUD hurt just when put in or for days afterwards?

If anybody else has pfd and put in an IUD please let me know your thoughts - did you do mirena or copper? did it hurt? did it make your pfd worse?

Thanks loads

p.s. very confused about vulvodynia....i had one doctor tell me I definitely have it...(I made him double check by my followup)my gynecologist says NO I dont have it. I does not hurt to sit or wipe myself with tissue....so confused

[ginaaa22]

Thank you EVERYONE for responding!

It is so nice to have a community to turn to.

My interest in pcos and hashimotos is as related to bladder issues. In my case they all happened at the same time and I DONT believe it is a coincidence.

The problem is that each doctor specializes in their own thing and nobody is looking at me as a whole. It is very frustrating.....what came first? did hashimotos mess up my hormones which made me get pcos....did pcos mess up my hormones which messed up my thyroid....where does all of these urinary problems fit in....they all happened at same time so they have to be connected!

ginaaa22 - your pcos story interests me.....because I also believe I dont have pcos - i had 3 children no problem - and am pretty skinny (- my only issue was adult acne....) they diagnosed me with pcos based on my testosterone being very high -

In regards to the IUD - I originally was leaning towards the copper one because I was scared of hormones but have heard from the gynecologist that the hormone one circulates hormones locally - so im glad to hear your doctor agrees

Do you have PFD or IC? Did putting the IUD hurt just when put in or for days afterwards?

If anybody else has pfd and put in an IUD please let me know your thoughts - did you do mirena or copper? did it hurt? did it make your pfd worse?

Thanks loads

p.s. very confused about vulvodynia....i had one doctor tell me I definitely have it...(I made him double check by my followup)my gynecologist says NO I dont have it. I does not hurt to sit or wipe myself with tissue....so confused

You should definatly check with a reproductive endo. I was diagnosed with PCOS because of infertility, adult acne, irregular periods. I gained weight when I got depo provera really bad. My test lvl were also high but I don't believe it. I have been checked for diabetes and BC didnt really help me.

My dr said that the mirena is better than the cooper because you can have allergies to copper. I have IC, vulvodynia and fibro. Not officially diagnosed with PFD but my PT said I do. I haven't been checked.

My IUD hurt the first 2 days afterwards and then 2 weeks later I got bacterial vaginosis and ended up in the hospital. This is a common risk associated with getting an IUD put in. I usually get acute infections after anything like that. It has made my PFD much better. My worst symptom of VV is severe itching.

Check in your area for a dr in a vulvar center. I go to the one at the university of michigan and they are great. PT is also really helping.

[sailawaygrl]

I think you are misunderstanding PCOS. It was thought years ago that you had to be obese to suffer from PCOS. NOT TRUE, I was diagnosed when I weighed about 110 lbs, I usually stay around 140lbs but weigh more than that now thanks to a med I was given for a different issue. Not happy about that as it is making me feel awful. You have no idea how many times I have had a Dr tell me I don't have it because I am not obese, I am far from obese. Yet I know for a fact I have pcos.

pcos is a syndrome, so much like IC symptoms can vary. Generally what leads to a diagnosis is irregular periods, extremely heavy and long periods can be part of IC. Adult cystic acne usually shows up around the jaw line. hursitism, caused by hormone imbalance and is hair growth such as on the face, some chest and other places. NO you don't grow a beard! Many times people with pcos are insulin resistant. Meaning your body isn't using insulin correctly causing food you eat to be stored as fat and not being used at that time for energy. Metformin corrects this for many people. The cystic part comes from the occurrence of many small cysts on the ovaries. What happens when you ovulate is that the egg can't break through the ovary wall and you develop a small cyst, usually not painful but will show up on a sonogram. Some women will have thinning hair.
Most of these symptoms are seen more prominently in the very worst cases. I did have a problem with acne a while back because I was put on the wrong BC to help me and it caused my hormones to get out of wack! It also can cause problems with conception but I think those that aren't as heavy do better and is known that if someone that is heavy loses some weight they will usually ovulate just fine. I have a daughter and have also been pregnant one other time but miscarried. So, I had no problem conceiving.

If you question your diagnosis please go see a reproductive endocrinologist. In the beginning the only problems I had were extremely painful periods and pain during ovulation, from the cysts forming. Later I started gaining weight and feeling like no matter what I ate I felt shaky like I was starving. That is when I learned about the insulin resistance. We don't have diabetes, I test fine for that. This is something you need to be sure about because if you do have pcos you are at a highly increased risk for heart disease and need to be aware of that.

There is a site called www.soulcysters.com much like this one run by a woman with PCOS, you might want to take a look.

Wishing you both the best.
Sandra

BTW, I don't think that my pcos is related to my IC in that it doesn't affect my bladder. I think it kept me from getting diagnosis of IC for a long time. I had constant pain and pressure in my bladder area for years. I had to surgeries to try and find out why, but other than my bowel being adhered to my abdominal wall and something that the lasered off that wasn't endometriosis but did come back again.
The two might be related in the sense that my body seems to not work correctly.

[ginaaa22]

I dont believe I have it. I am seeing a reproductive endo next month. I have never had cysts on my ovaries. I do have adult acne but it is on my chin and forehead. The treatment for PCOS didnt help me. I think it was just one dr trying to give me an answer so I would stop wanting answers. I was diagnosed with PCOS before I found out I had IC. My new gyn said she believes I don't have it. I'm not saying that people with IC cant have it but me personally I don't believe I do. I do have excess facial hair and a black happy trail and I have light red hair and always have. My mom has the same hair problems as me and she doesnt have PCOS. So does my sister.

[cmclien]

Autoimmune-

I have hashimotos too. I have had it for about 3 years but I also had postpartum thyroiditis after the birth of my 2nd child about 12 years ago. I think it went away....but never really sure. My TSH just slowly went up but in a normal range, then they changed the normal range and I got my pcp to send me to an endo. The endo didn't think I had it even though I had so many symptoms and I kept thinking my skin looked yellow (can be a side effect of hashi's), she sent me for an ultrasound just to be safe and I had growths on it so she immediately started me on meds at that point. I have felt so good being on the meds. I should restate that, I have had so much energy being on the meds, I used to yawn constantly. It took me months to get used to the synthroid as I am super sensitive to meds. My yellow skin went away, my doctor looked at me really weird when I first said that as she didn't see it

But on to IC, i don't know if its related to my hashi's as I've frequency for 25 years. It has definitely gotten worse though in the last few years with more pressure and becoming more diet sensitive. It is frustrating when doctors only deal with one thing and cannot see a big picture. I still think there could be an autoimmune element to IC because when I was put on plaquenil which is a disease modifying drug often given for autoimmune diseases, it went away. Then I developed an allergy after a few weeks and had to go off the med and my IC came back.

[autoimmune]

cmclien-

I would be interested to see what other ppl with hashimots have to say.....what came first thyroid disease or ic?

the way I see it is: that hashimotos messes up your whole body by either slowing it down or speeding it up. In my case I was hypothyroid....and I firmly believe that the big uti that I got (that started this whole Ic thing).....damaged my bladder and my body was too slow to react to heal it. And because I didnt discover that there was something wrong with my thyroid until 6 months later....my bladder never recovered....because all my systems were slowed down by my thyroid -- including my immune system!

I think that in a person with normal thyoid function - the body would have responded with full force to heal the bladder (of course with antibiotic treatment as well)

another theory that is sort of related.... is that my thyroid mustve slowed down my reproductive hormone function as well.....I know that estrogen keeps the whole bladder healthy .....maybe at the point in time when I got the uti there was not enough estrogen to calm the bladder down.......

i wud be very interested to hear other ppl thoughts

thanks for listening

[mrspaquet]

i have a question for your dr. prescribing you with valium, how does that help the IC?? i think i could use small doses valium to control anxiety if it would help my IC maybe that would help convince my dr. to prescribe it to me.

also i have been on depo provera for 3 years while not being medicated for my IC i did not find that it aggravated my condition nor did i have any significant weight gain. previous to depo i was on the nuva ring for 2 years. same situaton.

[sailawaygrl]

Gina,
You might not have PCOS it is possible that you just have some hormones that are stronger than other's and cause those few symptoms. You do from what you say have some of the symptoms but if it isn't bothering you then I wouldn't worry about it. Do keep it in mind though, I started having more symptoms years after being diagnosed. The ovarian cysts that come with PCOS are very small, and if you are on BC they don't appear. What treatment did they give you for PCOS? There really isn't a treatment other that treating the symptoms much like IC. BC to regulate periods, and treating acne, spironolactone for the hair growth. I hope you don't have it, who needs one more thing to add to the pile???

Mrspaquet,
Valium can help with pelvic floor dysfunction that can occur with IC or without it. It comes from our pelvic muscles staying in a constant tension. Valium helps soothe the muscles and eases the pain of PFD. Some of us take it orally and some use vaginal valium suppositories that help really well. It also helps me sleep more soundly. Hope this helps to answer your question.

Sandra

Sandra