Thursday, January 10, 2013

Sorry... TMI?

Warning: this may contain content that could be disturbing or at least awkward for some of my loyal family member readers! Feel free to continue reading, I have no shame, but don't say I didn't warn ya! 

After weeks of misery and no relief I finally decided to give the vaginal Valium suppositories a try! I am the worlds cheapest person and the idea of spending 74 dollars on some thing that may or may not help was a... Hard pill to swallow... (Heh heh) but I wanted relief more than I wanted to be frugal. So my devoted hubby went to the fancy compound pharmacy and picked up the suspicious brown lunch bag. 

When I got it I had no idea what to do so I posted on an IC board and got some great tips and also had a few people ask me to let them know how it works. So I decided to document my first three experiences using it for all of the IC, Vulvadynia, and PFD sufferers out there. 

January 3rd, 2013
9:05AM- The insertion was a lot easier than I expected. My vaginal muscles kind of just did the job for me once I got it in there. I read that I should lay down for about an hour after putting it in so I'll be lying in bed with my legs up if anyone needs me. 

9:38- I don't know if it’s from going to bed super late and now laying in my cozy bed or if it’s from the suppository but I am suddenly really tired! The pain hasn't subsided yet but I can feel it melting in there like a Popsicle on a hot day. 

9:42- Owie! It's starting to burn as it seeps out a little bit. I have some open cuts down there so that may be why… 

10:01- Oh my goodness, the urethral pain is miraculously gone! My bladder is still aching but the constant burning in my urethra that makes sitting and closing my legs painful is nowhere to be seen!! 

10:56- I tried getting out of bed to do a little bit of cleaning and within minutes I felt it making its way south and dripping out. Weird.

11:06- Back in bed with my legs up in the air. The pelvic floor and urethral pain is still gone!! 

11:50- I tried to get up again but it just turns me into a disgusting sort of dripping faucet! 

12:13- Sudden intense cramping in my lower abdomen. It feels like bad menstrual cramps! 

2:06- Well I went pee. It hurt like normal as I went but the post-pee-pain wasn't as horrific as usual. I'm still having bad cramping that comes and goes. I'm going to get in the shower and see if that helps! 

2:51- After being in the shower for almost an hour the urethra pain is coming back. I don't know if it’s wearing off, it's been washed away, it's all dripped out or if the pain is just breaking through but it's annoying! 

 So I have to say this day has been inconclusive! I'm definitely thinking I'll try it at bedtime next time because the dripping was obnoxious. One of the many weird things that goes along with my IC is that I can't stand wearing underwear! The waistband hurts my bladder and the mere presence of the tight fabric on my lady bits irritates it. So the vag drippings were extra annoying. I spent the day sitting on a towel after realizing it got all over my sheets. 

The cramping could have been coincidental but it felt like period cramps which I rarely get these days since I get the depo shot. I am rejoicing that it helped my urethral and vaginal pain though! After this first trial I think it’s going to be a great tool to have in my IC tool box!!

Trial number 2
January 4th, 2013
Well... My hubby and I had um... marital bonding time... this evening. Now I'm in the routine torturous pain that follows. So I decided to give the Valium another try! It is late at night so I'm hoping the dripping won't be as bad and if there's cramping again it will just be after I'm asleep! Here goes nothing!

10:32PM- Another successful insertion, the pain is so bad that I did it while in the shower and I am just hoping that I can get out before it starts melting! 

While we're on the edges of our heating pad and tubs waiting to hear what happens let’s just talk about IT. I know we're all thinking about IT. I think IT is one of the hardest yet least talked about subjects in the IC world. Doing IT is really, really painful for us with IC. IT is such an important part of marriages and yet IT is the single most disruptive things we can do to our pathetic pelvic floors! 

The actual act of doing IT can be tolerable if certain rules are followed. However some times in the moment the rules are out the window and I'm the one that pays. My urethra is my greatest foe and yet it lays just mere centimeters from the uh... entrance and the bladder is propped right above. So any pressure in the wrong direction and the wrong kind of fireworks erupt.

So if you could imagine IT isn't easy but after 4 years of practice we are getting the hang of IT. The most important things are to make sure to use lots of lubricant, avoid the previously mentioned areas, and to take things slow. Also know that every time is different and you just have to be patient. Something that hurt last time might be fine this time and something that usually is okay could feel like blazing daggers. You and your hubby have to take time and try different things.  Also, be open to the fact that sometimes IT’s just not going to happen. Honestly my husband is just as happy with a back rub while he watches a new episode of Duck Dynasty. Maybe not JUST as happy but you know…

However! No matter how bad, tolerable, or good IT goes the post-relations is always misery. If I can plan ahead I take pain meds before but if not, my first act is to take meds then head straight to the shower. My bits are always very swollen after IT and the burning is shocking. Like I check for flames and have the fire extinguisher ready.

Anyway... Back to my Valium diary.... 

12:22- Still no relief. It's still burning like the fires of hell!! 

12:50- Cramping is starting!!! 

Sunday January 5th, 2013

8:08am- Well I just woke up... I must have eventually dosed off despite the pain last night. I just had my morning pee and it was just as painful as ever!! 

So I will say I definitely didn't like the night time theory. I feel like I just wasted $2.46. By the time it kicked in I was already asleep and when I woke up it had already worn off. Oh well… it was worth a shot!


Trial 3
January 6th, 2013

I’ve been in the shower since 8 this morning and I need relief so I am going to try it again!

1:18PM- The insertion went ok, I decided to put it in while I’m in the shower again but since I was sitting I didn't feel like it went in as far as before. 

1:22- I am already feeling it melting and the urethra pain seems to have eased! Wow that was fast!

1:23- I stood up to get out of the shower and felt the thick, warm goop oozing out so I quickly ran to bed with my legs shut and laid on a towel! The urethra pain is gone but now I feel confined to bed because of the dripping. 

Side note- I did talk to my doctor today and she mentioned that I could leave it out of the fridge until it kind of melts and then apply it more like a topical medicine around the areas the hurt! I'll have to try that next time! 

2:14- I am having some cramping but if I keep the heating pad on me it is tolerable. 

2:30- The original pain is still gone so I took my towel and my heating pad downstairs where I made a nice little nest on the couch. It's great to have the pain gone and be out of the shower, it's just a bummer that I'm finally feeling good and have to stay lying down. 

5:12- I had to get up to get my kiddos dinner ready. I walked around like a Barbie's whose legs have been tied together. I still couldn't put on any underwear or pants so I waddled around in my robe trying to keep from dripping on the floor. EW!

6:01- The pain is back, headed to the shower! 

Well after three different scenarios I do totally acknowledge that it works amazingly! It erases any pelvic floor or urethral pain I'm feeling which is generally what keeps me in the shower. 

However it does cause moderate cramping and the whole dripping thing is difficult, especially if there are any cuts. The valium getting into the open cuts is brutal but I would much rather be stuck on a towel with a heating pad and tiny paper cut burns in bed than in the shower writhing around in agony! (Drama!)

I think my third trial will be how I use it most often. If I've been in the shower for a while with no other hope of escape the Valium seems like a great option! If I'm going to be useless and stuck somewhere it might as well be the couch and in less pain!

So my recommendation is to give it a try! The urethral and vaginal pain relief alone is worth all the hassle!! 

If you have any other questions, don't hesitate to ask! I'm an open book… as if you couldn't tell already!


68 comments:

  1. Wow... LOVE LOVE LOVE LOVE that you took the time to do this and share your story and experience. This is exactly the type of logging that IC patients should be doing as they explore new treatments. Girl.. you rock!

    I had to use compounded suppositories for a few years for a chronic, drug resistant candida infection and could totally relate to what you are saying and describing. So, as you've figured out, it's always best to lie down as soon as you put them in to avoid the drip or, worse, the whole thing just slipping out. I just have to wonder if the heat of the shower is making them melt more! Hmmm.... possibly.

    Sounds like your urethral pain is off the charts. Any chance that you might have an infected paraurethral gland?? Your description makes me wonder actually... given the fact that urethral sensitivity isn't normal so acute in most Ic patients though, for some, it is. As a child I was diagnosed with a urethral stenosis and had to have dozens of urethral dilations to keep it open. Now I realize that it was probably the result of pelvic floor dysfunction/tension.

    Are you doing pelvic floor physical therapy yet??? Is it working??? The book Heal Pelvic Pain has a series of gentle stretches that are recommended for reducing pelvic floor pain... and it would be very curious to see how you did with those as well. Also, Beaumont's Women's Urology Center has two fabulous CDs on pelvic pain, IC, PFD and vulvodynia that you might find very very helpful.

    Would love to talk with you and hear more about your story. You can call me at the IC Network's office anytime. 707.538.9442.

    Jill - President & Founder, Interstitial Cystitis Network

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    1. Again! Thank you so so much for you're unbelievably encouraging comments on my blog!

      I do have INTENSE urethral pain, I have never heard of that infected gland thing... I'm definitely going to be researching that!

      I have been in and out of pt over the years but in general the flares always outweigh the help. Usually I flare the day of and the day after then maybe notice a little bit improvement for a day or 2 after that. It just wasn't worth it to me. I'm sure I'll try it again over the years though.

      I'll definitely call you, I'd love to talk more!

      Once again, thank you so very much for your support, promotion, and such positive comments!

      Delete
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  2. No sure if you'd want to try it out, but I used to put the valium suppository in before having sex and then it would act as a muscle relaxer and lubricant which helped me during. It did not bother my husband or make it less enjoyable for him. Just thought I'd mention it!

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    1. Yeah, my doctor mentioned that... it just takes a lot of fore thought... ya know? BUT, that's way better than being in misery for 24 hours after! So I'll definitely plan a romance night and make it happen! Thanks for reading and commenting!

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    2. If you do put it in before, DON'T DO ORAL or it's wasted in his mouth...

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    3. Can you answer this question?
      If you use the valium before IT, does your husband get the side effects as if he was the one that could it?
      Thank you for your experience post! I greatly appreciate it ❤

      Delete
  3. omg i am soo glad u posted this !! hate hate hate that u are in this amount of pain tho !! thank u for sharing your private moments with those of us who may not feel your pain to that extreme but are battling our own demons just the same ! many hugs and well wishes -- joy

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    1. Thanks for reading and your encouraging comments!! :0)

      Delete
  4. Thank you for documenting this! I also use valium suppositories, but mine is valium & baclofen

    ReplyDelete
    Replies
    1. Oh! A muscle relaxer, that's genius!! I'll have to mention that to my dr!

      Delete
    2. I was on valium suppositories for two months,i think they are horrible,the valium does get into your blood stream and muscle tissue they also affect the brain,nervous system.
      I stopped taking them after i started to notice lumps in my muscles they were slowly turning into flab with tiny bumps in them,i was exasted all the time,it was a night mare,it has been a month now since i stopped them and i still feel the affects,they are highly addictive,everyone should read exactly what valium does to your body before blindly trusting a doctor.i wish i did,im going the natural route now with gabba pectin,good luck to everyone.

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  5. I use the pill form of Valium rather then a melting suppository. i use it twice daily. I found it work way better then what you describe. the little tiny pill is inserted and i let is dissolve for about 10 minutes before i get up and start doing things again. as far as a drip, it looks light bright yellow discharge no more then you would normally see and for the most part doesn't burn unless you stop using it. but that may just be the ic. I would reccomend you ask your uro for the pill form prescription. the pill dissolves into your insides and the drip is not really a drip. Hope this helps anyone who is considering the switch or finding relief

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    1. I bet it's a heck of a lot cheaper too because you don't have to go to the special pharmacy! Thank you so much for filling me in, I'll definitely chat with her about that!

      Also thanks for reading and you're super helpful comment! :o)

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  6. Just thought I would add my 2 cents. Thank you for starting this discussion. I use 2.5 mg of the pill form of Valium and insert it vaginally every night. There is a study (Carrico D, et al. Vaginal diazepam use with urogenital pain/pelvic floor dysfunction: serum diazepam levels and efficacy data. Urol Nurs. 2011 Sep-Oct;31(5):279-84, 299) that supports its use this way - though they suggest crushing the pill and mixing it with Replens. I tried that but it was too messy so now I just insert and lie down. It certainly helps with the intense pain and though I still flare occasionally, it's a really good option.

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    1. Thank you so much for your "2 cents", that't good to know it's a legit usage of the oral medication! I agree mixing it would be high maintenance and messy, so just plopping the tiny pill in there compared to the giant suppository or messy creams is awesome!! I really appreciate you reading and commenting!

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    2. Also wanted to comment. I was just released from the hospital from a two day stay bc of URETHRAL PAIN. WORST, PAIN. EVER. And I've had it all, including a COMPLETE uterine inversion with my first born 13 years ago (which, btw, I truly believe that this is when all of this began tearing it's ugly, mean, unfair, lonely, scary head!!!

      Delete
    3. I meant "rearing it's ......."

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    4. I am trying very, very, hard not to let this get me down as I have three kids and am fairly young. I'm fighting.... But so tired. NOBODY gets this PAIN and it's intensity! I've lost my wonderful job as a Speech Language a Pathologist and my husband and I are airing to see if we are going to get disability. It's been awful. But I'm a Christian and I'm trusting....

      Delete
  7. I also use the pill form. But i haven't really seen a difference yet! And once the pill dissolves there was no dripping, but i did get some urethral burning from it.

    ReplyDelete
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    1. Thanks for letting me know! Have you tried taking it orally, does it help the pain? Or make you feel drugged and sleepy?

      Thanks again for reading and commenting! :0)

      Delete
  8. you can try it rectally and see if that helps.. that is what i had to do when it became to irritating for me.. also there are different bases you can try.. the one i use melts more slowly and doesnt burn me as much. If you havent tried PT already that is also helpful. thanks for sharing.

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    1. Thank you being so transparent. I also use the pill form, generic Diazepam 5mg, I am able to get some relief from bladder and ureathral pain. I have bad allergies and they really affect my IC. Lidocaine is one of the things I am allergic to, so I am limited in some of the treatments.

      Delete
    2. Faith, thanks for reading and commenting! I didn't think of that either! That's another question I'm going to ask my doctor. It makes sense that the drips would be less but I would worry it wouldn't help quite as much. Do you feel like it helps as much rectally?

      Karen, I have lots of allergies to medication too its so obnoxious! I'm so glad you found some thing that helps and you can actually take! Thanks for sharing!

      Delete
  9. Great Blog-I too just discovered this wonderful way of breaking the pain cycle. I use it right out of the Refrig, right before I go to bed. I sleep on a towel, yes the dripping is a p ain, however, I will take the drip over the pain. It lets me sleep thru the nite and the first morning pee is not a screamer like it usually is. My heart goes out to you for the "Sex" part, I guess, I am almost lucky that my hubby is no longer interested in that part of our marriage,(married 35 years-I am 66, he is 73). I think he was interested, he would be dead as even putting just the suppository in, is like torturre. I paid $30 for a month (valium, baclofen_muscle relaxanat-& lidocaine) Check other stores on the cost-with all of the other meds, I take, this one is the best for the IC ,pelvic floor, pain. My HUGS to you my IC friend-Keep on trying-Oh and try one or two size up in undies- I understand that pain too-YIKES

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    1. I agree! Drips are far more tolerable than the pain! Good idea about the bigger undies too, don't know what I didn't think of that!

      I'm so glad that your SO is so supportive and understanding of this horrible disease and all the inconvenient side effects! My hubby is young and um... fertile? But he is also really understanding, which I am very thankful for!

      Thanks for reading and taking the time to comment!!

      Delete
  10. Hi!
    My name is melanie and I write a blog about my IC experience and living with chronic pain, being a mom, blah blah blah. I love this post. I still live in my PT's office with PFD (my bladder is out). I used the vaginal valium for a long time when I had my IC and found if I took it more regulary it was helpful to keep my symptoms under control. I have heard from some people that using regular vaginal tabs and putting them in vaginally can get you the same effect but it is just a matter of if that is irritating (it might offer less dripping, which I know is a pain). Another thing I did was once inserted, I used ice packs on my girly parts and that helped it absorb from the inside but slowed the leakage out (if that makes sense) and it was something that just helped in general. I totally agree with pretreating before sex, a must. It will help post sex flairs but they suck no matter what. I get the undie thing too...Another idea is see if you could split your suppository and do a half dose, less med might still give you a good effect with less dripping. Happy to chat anytime.

    My blog is on google at www.mommyhurts.com if that is helpful. My whole IC story is there and your not alone!!!

    HUGS

    Melanie

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    1. Oh, I still take the vag valium now. Nightly and I will say it is helping my PT get to where she needs to get during PT.

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    2. I just read a little bit of your blog and actually it sounds like we have really similar IC's with bladder pain but also really severe urethral pain and PFD. I'm sorry you're still having such horrible pfd pain even after the removal. It's just not fair at all for you!

      Thank you so much for taking the time to read and comment on my blog. I'm looking forward to continuing to read yours! :0)

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  11. Another note for easing that burning pain. An excellent doctor in Chattanooga recommends his patients fill a condom with water and freeze. Place it as comfortably as possible in your female area inserting only as far as you can tolerate. I used a bag of ice wrapped in a handkerchief as I am allergic to latex. Also careful to wash the handkerchief in fragrance free detergent, rinse twice, and air dry before use. Washing agents irritate those sore spots even more.

    Kathy

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  12. Anyone on oral Uribel and Elavil? Uribel helps the spasms and Elavil is an antidepressant which is used at IC is chronic pain. My only pain is in the urethra area and above it, can feel throbbing there. Pain improves by voiding and wet compress with baking soda appled at end of urethra helps also. Have not been offered anything stonger and sometimes the meds I take are not enough. Tonight at work there was no time for me to care for myself or pee every hour and Uribel did not keep me out of pain. Frustrated. Luanne

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  13. I am an IC patient who has suffered since 1997. I did every medical treatment and surgery that was offered with the exception of a hysterectomy and bladder removal. I went on my own healing crusade ( as I'm in the medical field and my husband is a doctor). I decided to open my mind up to alternative treatments and different ways of thinking of this disease and ALL chronic disease. I can't say I'm "cured" as there is no such thing, but I'm 100% better and rarely use medications at all anymore. By just reading this one post I found some things that may make you way better. I have been very attacked by people unwilling to accept that their doctors may not know everything and there are a lot of options for relief that they don't know about or believe. Esp in the alternative treatment realm. In 2006 I was using 17 different medications, regular bladder instillations, hydrodistentions every six months and wasnt able to get out of bed much, nor enjoy my life. My children needed me but I couldn't fully be present. Fast forward to 2013.....I went back to school to get degrees in several of the altentative treatments and my goal is to open up a clinic to help all patients suffering with undertreated pain and chronic conditions. We have to start from the beginning and not just from when you first felt symptoms. I would love to give you guidance and help, but I won't push myself onto anyone. Our healing is intensely personal and I don't want anyone to feel that I'm projecting a " I know it all" because I certainly don't. If you would ever want to speak just respond to this post of your interest and then we can decide on which direction to go in. I'm offering free advice, support and hoping I can give you some different options that may have never even been mentioned. Even my husband (who is a surgeon) was skeptical about these treatments.....but he's not only a believer now, he's also trained in some of these things as well. He also had to watch other doctors disrespect and ignore me. Accuse me of being a drug seeker just because I wanted pain relief and I even had one PAIN SPECIALIST tell me my disease wasn't profitable enough for him to bother with me. So I am of course very distrustful of doctors as a whole, which is sad and hurtful. I hope you have a Dr. You can trust but I have picked up on things in your post which I know with certainty that will add to your pain, and would be happy to discuss them with you. Just respond with " I would be open to your suggestions" and we can see how we can do this privately.

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    1. Hi Fellow IC pt I would love to know what helped you. I am my wits end. So tired of being sick. I have other autoimmune conditions and problems that add to my lack of a normal life. I truly don't know if I am allowed to put my email so if I get in trouble I just won't do it again.

      It's vlaud777@gmail.com
      Hope to hear from u.

      Delete
    2. Hello, I would be open to your suggestions. Please contact me at sendtoella@hotmail.com. Thank You very much

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    3. I feel so horrible that there are so many people with the same extreme pain that I suffer with, it ruins your life. I was born with spina bifita, at the age of 17 was in a car crash that crushed 3 vertebrae & a broken neck, in my mid twenties was diagnosed with arthritis & was put on Naproxin. A few years after that was diagnosed with low thyroid ( it took the Drs. along time to find out what was wrong). Then diabetes took me down a little more & the arthritis got a lot worse(many different pills for this, over the years). Afer many UTI's, the kidney stones started their fury. One stone was too large to pass, so the Dr. pushed it back up into the kidney, he used some type of machine to brake it into pieces so it could pass thru. Right after this is when I started getting this horrible pain in my abdomen & after quite a while he went inside with a scope & saw that I had IC. I have been taking Elmiron for 5 m0nths & the bladder pain is getting better, BUT the urethra pain is still more than I can bare. I live in a small rural area and the Drs. here don't want to try anything they haven't done before. I feel so lost & helpless. ANY help, PLEASE any help for this PAIN, PLEASE!!!

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    4. I would be open to your suggestions Could you send email to J4KY@outlook.com with more info?

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    5. Please help me. I have been in SO much pain. It starts out as a gnawing pain then stabbing in my abdomen. I have three fibroids pelvic floor dysfunction IC and possible endometriosis. I have to have a lapriscopy with dissention and a cysticopy along with bladder treatment. I just want something herbal, natural. I dont care if it tastes bad. I will try it. Please have a heart and email me. I need you! Michele Joefish8788@gmail.com

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    6. Hi anonymous. I was just diagnosed with prudendal neropothy. I had one nerve block done vaginally witch made things worse and another one in my lower back which didn't help at all. I am currently on a suppository of valium which helps a little but I seem to be getting hives from it. Please help me with any suggestions trying to get the nerves and muscles to relax. I appreciate all your help. Thank you so much.

      Delete
    7. I’m not sure if I have what you ladies have but I have had 15 surgeries done due to mesh implant and use the suppositories because of damage to the inside of the vagina. My bowels and intestines broke through into the vaginal area after complications from surgeries in 2016-17. The suppositories work but I build a tolerance very quickly as my body has a 10-12 day transit time. What that means is that it take longer for my body to clear food and any drugs. So I have to be more careful. I did just try the Valium suppositories before having sex and it helped with the pain. Most came out after and pain was pretty intense so inserted one rectally and vaginally. I have found rectally works better for me. My dr says there is a large blood vessels there that absorbs more quickly. For my husband and I we have a easy way to signal that I’m feeling up to sex ( towel on the side of bed)and I was also given the choice of pt or patient husband, I chose the latter. After 28 years of marriage, he is very patient. It has only been 3 months since my last series of 5 surgeries so we are still working on positions that cause me the least amount of pain. I am 51 and a Christian and for us it is a way to come together in a physical and spiritual way that keeps our marriage strong. And something we both enjoy so it is important to put the work in. I don’t know if any of this helps. I started having surgeries in 2005 and it has been a comedy of errors, fixes and errors but you either laugh or cry, pray or try to carry it on your own. I understand that not everyone seeks comfort in the Lord and support from your church family but meditation and acupuncture helps also.

      Delete
  14. I have always used axnax works like valium,but its shorter acting my doctor had no problem either or to use Dr. moldwin wrote about takeing small amounts of valuim to releive pelvic pain. I have recently had severe pelvic pain I take 10 mg twice a day. And its generic orally is best for me I get a little tired but it beats the pain. I too recently tryed the suppository it burned , doctor said works the same if you but it up your sorry Rectum, so it dont burn your vagina. worth a try. but I use oral AND ITS CHEAP IT WORKS.

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  15. Just one thing to share,,,,,I am 47 and was misdiagnosed until age 40. The doctors thought I had bladder infections and never looked for I.C., back then, it wasn't something that stood out. Luckily for my 17 year old daughter, I recognized her symptoms at 14 and got her some help, once I got the doctors past the idea of how young she was. Anyway, my comment was, we discovered that her episodes of I.C. pain were worse that day or the day after swimming in clorinated water. After that monumental discovery, we started making sure our house water was filtered because that contained clorine too. I just wondered if for you the shower was helping for a while, then the intense pain later might be from absorbing all the clorine during the shower? Another tip is to take "oil of oregano" suggested to me many years ago by my chiropractor. You get two bonuses from it. One, it's an antibacterial, antifungal so it kills the little micro bugs that can be eating away at your insides. Two, it helps keep you regular, which a lot of people never discover can help out a lot with I.C. pain. Good luck.

    ReplyDelete
  16. I was so excited to finally get this diazepam vaginal suppository today. I thought I could finally localize the pain relief without having to take valium or xanex orally and have it effect my whole body leave alone get addicted to it. But now after using the 5mg suppository for the first time 3 hours ago, I have burning and mild cramping. I am so disgusted with this. I am a teacher and have to run home sometimes during a prep or lunch break to take a warm bath. Kind of scared to do the rectal thing. Any suggestions would be welcome.

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  17. Just started Diazepam vaginal suppository. After 18 years of every dr, telling me I had a UTI or it was all in my head, I was finally diagnosed 2 years ago. After 2 years of the specialist telling me to relax and giving me preleif and proced, i found a dr who listened to me when I said the pain was debilitating. The specialist, is very nice and very knowledgeable however he does not believe pain meds were necessary. REALLY !!!! Obviously he has never been in pain. I did my own research, brought it to my acupuncturists office (they have a dr on staff). I sat down with the dr and accu, I explained what I found and they listened and researched and found a compound pharmacy and even offered to drive me to get it, since I could barley stand up straight. Took the 1st dose 5mg...in 20 min the stabbing pain in my urethra and vagina went away. I still have slight pressure but after weeks of an awful flare I'm sure it is going to take a few doses to calm it completly, I know its not a cure but there is a hope for relief, and I have only used the bathroom 1x in an hour.

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  18. I cant thank you all enough. I do have a good doctor and we are really trying to get things more manageable.I honestly think the pain gets so much worse when I am under stress. I had allergy testing a few years ago and am allergic to most things. I get hives when I am really stressed so I am wondering if there is a connection? I took 2 weeks to see if I would be better and I was until I started getting work related emails again. It isn't feasible to quit my job now but it is something I think I will have to do . I am sad to think of so many dealing with this. It actually is better for me than it might have been because for a few days we thought it was bladder cancer . I think a strong relationship with your hubby really helps though. I have been married 30 years and now we worry more about each other's aches and pains than how "hot" we look! That's ok the support helps so much. Good luck to everyone .

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  19. I currently use Valium suppositories (post imtercousre) and it's hit or miss, I have to lay in bed, bottom up for a LONG time and do get some degree of pain relief. I recently moved to Knoxville area but I'm uninsured (sigh)...any recommendations for IC knowledgable Drs. who truly understand and are willing to treat the severe pain that we deal with so often (for me a couple weeks a month). TIA

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  20. I'M 55 and was diagnosed in my early 20s with pelvic floor dysfunction/vulvodynia. saw many doctors but Dr. Moldwin gave me the correct diagnosis, I was prescribed valium for PFD and elavil for the vulvodynia. I also started acupuncture a few years back and have been lucky with minimal flare ups. However, I had two back to back UTIS, one in May and one in June and now I constantly feel like I have a UTI. I've had several urinalysis which came back clean but I'm miserable. AZO doesn't help and my current urologist did CT scan and MRI and she said all she can see is Pelvic floor congestion but she isn't sure that is what is causing my symptoms. I am going back to Dr. Moldwin but couldn't get an appointment until late December. Anybody else out there have terrible UTI symptoms due to pelvic floor dysfunction? I'm wondering if it's not PFD but something else. December can't come soon enough......

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  21. I have had IC since 1993. I do feel there is a neurologic pain from involuntary muscle spasms of the pelvic floor. I am a mom and speech-language pathologist, who works part time. I was in college when I was diagnosed. It has been a long and painful journey. Did physical therapy, used elavil, elmiron, valium oral and suppositories. I have heard about botox injections, just am not sure I want to self cathetrize! My urethra kills me all the time! Also have issues going number 2. Always have and feel muscles are spasmed shut in both areas! I also was thinking of valium injections directly into the muscle. Anyone done this???

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  22. I work full time, I meant to say...

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  23. Valium suppositories have been a life saver for me. Started thee constant back-and=forth for UTI pain with Dr. 6 months ago. He and ER doctors had no ideas. I finally found the Suppository treatment online but still had to wait for urologist appointment before I was prescribed the Valium. So my wait time of horrible pain was 3 months. I wouldn't wish this on my worst enemy except maybe my doctors who just "couldn't think of anything to help". That's mean but they sure need to "get educated" about PFD.

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