Chronic Interstitial Cystitis & Vulvodynia Make Me Feel Broken

Sat, 09/13/2014 - 08:56
Submitted by Betty Dodson

I am unsure if this is the right email to ask you a question since there are several on your website. I wish if possible that you don't post my question on your website.

I am 24 and at the age of 20 I was diagnosed with chronic interstitial cystitis and vulvodynia. I have seen at least 10 specialists from urology, gyno, pelvic floor physio, etc. I feel that down there doesn't belong to me after being examined over and over again on a weekly basis.

Every three weeks I go to the hospital for an installation into my bladder through a catheter. I also go for pelvic floor physiotherapy every three weeks. My vagina is often very red or raw. I often have pain. When I try and masturbate there is no use because it just hurts more. I don't seek any personal relationships because I feel broken. I fear sex because I know it's going to hurt.

Do you have any suggestions?

S

Dear S,

I am not a medical doctor but a sexologist. However, it seems to me you are being excessively treated and some of it sounds like they actually worsen your condition. Instead of being a passive victim of medical procedures. I suggest you take control of the situation by devising your own more natural approach. I just went to Google and found a lot of information that might be helpful. One good site was:

http://www.interstitial-cystitis-alternatives.org/4-step-guide-to-recove...

Also regular loving and gentle vulva massage using an organic oil with your mind focused on healing while repeating some phrase so you mind is thinking positive, will help you to heal yourself. Louse Haye's little book "Heal Your Body" has been very helpful to many. She looks at the mental causes for illness and suggests a metaphysical approach to overcome them.

The mind is a very powerful tool for healing. She believes that bladder problems come from anxiety, holding onto old ideas, fear of letting go and being pissed off.  One phase she suggested repeating: "I easily and comfortably release the old and welcome the new in my life. I am safe."

You can change the words to please yourself, but you have nothing to loose by giving this a try. Anything would be an improvement over what you have described in your email. It sounds like the medical professionals are torturing you in the name of curing you. Time for you to take control of your own healing path. Wishing you a happy recovery.

Dr Betty

Liberating women one orgasm at a time

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Chronic Pain

Sun, 09/14/2014 - 05:59
NorthLondonHousewife

Dear S,
A member of my family suffers from chronic pain and recommended the following:
http://www.moodjuice.scot.nhs.uk/chronicpain.asp

Reading through it a number of points struck me as relevant to your situation.

Managing your activity - taking a balanced approach to regaining your body and sexuality via masturbation ie. start with small targets, being able to touch yourself with a gentle vulva massage briefly then stop after a couple of minutes building up to a specific time maybe 20 minutes.

Pace yourself by setting regular, acheivable goals for each day. The goals need to be small, possibly difficult but always realistic. Orgasm may be a long way down the line & partner sex even further - baby steps.

Set aside time. You need to carve out time in your day to practice, time to massage yourself and regain your body. You should be the one most in touch and touching your body not the doctors.

Set aside time to relax. This isn't the same as practice time, which may be difficult or relaxing depending on the day and how much pain you're feeling. We all need time just to sit and chill, even if it's just a regular 15 minutes with a cup of tea when you get home or 20 minutes in the bath at the end of the day.

Be assertive in your dealings with doctors, family, friends and strangers. Be clear about what you want to happen and don't be afriad to ask for help or to say "no"

Regular sleep patterns and regular physical exercise are important. Life is a lot harder if we're tired. Regular gentle exercise will help keep the rest of your body healthy.

Above all, be kind to yourself. Wishing you well. NLH

Chronic Pain

Sun, 09/14/2014 - 10:14
Anonymous11 (not verified)

Dear S.,

As a fellow sufferer, I am disappointed by Betty's response.  While well intentioned, I'm guessing it was not what you needed to hear, that if you stop seeing all MDs you will magically get better.  While some alternative therapies may complement your current approaches, you should be commended for continuing to seek out so many treatments despite the considerable emotional stress they are causing you (I know the feeling well).  It often takes time to find something that works. 

That said, you should absolutely feel empowered to take a break from treatment for a few months when you are burnt out -- but discuss this with your doctors first, don't just stop showing up.  Combining a relaxation, meditation, and exercise regimin will likely be helpful in conjunction with medical treatments, you need to decrease your stress, although I know that's easier said than done.  If you haven't done so already, you should also tell your doctors which treatments are irritating to you. There may be ways to make the procedure less irritating or to do it less frequently.

Most importantly, I urge you to see a professional sex therapist.  I waited longer than I should have, and wish I had done it sooner. Ask your phyiscal therapist or doctor (or even better a fellow patient) for a good recommendation.  They should be recommended by AASECT and have experience treating people with sexual pain. I completely understand your feeling of disconnect-- I don't think the internet is going to solve it. You need someone to work through your feelings with you and help you to work out modificaitons that work for you. I'd also suggest you seek out a support group in your community if one exists.  Speaking with other women in your situation can be extremely helpful in processing your experience. 

This will also help you realize there are men and women in the world who will love you and work through your pain alongside you.  Don't give up all hope of a relationship, but I do think you're chances of success will be higher if you connect with yourself first.

Wishing you all the best!

I have vulvodynia which is

Sun, 10/12/2014 - 08:32
C.B. (not verified)

I have vulvodynia which is treated with a medicine called Gabapentin Lipoderm. It is a topical cream. (It has to be compounded for me by a pharmacist, it doesnt exist in a marketed tube form) I had excruciating vulvodynia that was inflamed with skin that seemed to have been cut by razorblades. Not exaggerating here. Any touch was excruciating, however gentle. Massage would be out of the question. This medicine gave me my life back but it seems like I'm one of the only people in the world who is being sucessfully treated for this condition. Drs online are in the dark so I think this therapy is virtually unknown. Show your Doctors this until you find one to help you. If they want to call a Dr. who prescribes it, my Dr's name is Kathryn Suarez, Cooper University Health System, NJ, USA. Notice I'm not linking to anything nor am I promoting a product. I hope this helps you! (P.S. To Betty and Carlin- I love you both and have learned so much valuable knowledge on your site. Thank you for the important work that you do!)