New symptom : vulvodynia

Hi everyone,

I've not returned on these forums for some time now, because I wanted to stop obsessing about my many symptoms (to put it in a nutshell : diagnosed with fibromyalgia, IBS, migraines, dust allergy...). Fibromyalgia I consider myself cured of, although I've not been very active these past few months, so no "physical activity" test as of today. Rarely get migraines now too, only if I've slept way too little the night before. IBS is trickier, but I've not been as good at ignoring symptomes as I've been with fibromyalgia.

The thing is, I feel like my symptom imperative has gone crazy since I've been working on my TMS a year ago and I'm stuck in a loop. I've seen a psychotherapist open to the mind-body connection for 1,5 year, have stopped now because I got to a point where I didn't seem to gain any new perspective from it.

I now seem to have developed vulvodynia. My gynecologist thinks it's just irritation from sexual intercourse (I started having sex last October) and didn't use the term "vulvodynia", she just prescribed a soothing cream. There's no thrush, just redness. The thing is, I didn't see my boyfriend for 3 weeks during the holiday, and instead of decreasing, the pain and irritation got a bit worse. Plus, I already had a little burning sensation when I was still a virgin and using tampons. I'm now at the point where I can't have sex, even with a ton of lube ; at the start it was a little painful, but still enjoyable, now penetration is impossible.

This is really, really distressing to me, as I've had a lot of anxiety around physical intimacy (which is one of the reasons I think it's TMS) and I'm now afraid my boyfriend will end up leaving me if I take too long to get better (he said it wasn't a problem for him to wait as long as necessary, but I'm not sure he realizes it can take months, if not years...). To put it bluntly, I'm tired of this shit. I also have PCOS, which can for sure contributes to dryness down there since I lack estrogens, but hey... it worked at first, and now this ? TMS all the way for me.

My question is : the TMS approach of ignoring the pain and pushing through (which I used successfully with other symptoms) seems pretty hard to use here. Should I push through, though ? I read about some doctors prescribing lidocaine to anesthesize the vulva... could it be a way to rewire my brain into thinking that sex = not painful ? I must say I'm at a loss here, and very tired of the symptom imperative.

 

I went through something similar many years ago, back when I did not know I had TMS. I would have symptoms of yeast infection, but no yeast infection was present. I would also have pain during intercourse AND bleeding! Very scary. It turned out the bleeding was from the contraception pills as they caused the cervix t0 have increased blood flow but this still did not explain the itching down there/pain during intercourse. What helped me get rid of it back then was stopping all treatment (including vaginal creams) and just not paying attention to it. In retrospect, I was treating it as TMS without knowing it was TMS.
I got rid of it eventually (it took about a year).

I thought about it later on when I found out about TMS and I figured out that GUILT may have triggered the symptoms as I was continually cheating on my boyfriend. My symptoms also made me paranoid about STDs, therefore what better way for symptoms to manifest than to make someone paranoid/fearful about a real disease. The body part where the symptoms manifested was symbolic for a lack of trust/dishonesty in a romantic relationship.

You mentioned this: "I'm now afraid my boyfriend will end up leaving me if I take too long to get better (he said it wasn't a problem for him to wait as long as necessary, but I'm not sure he realizes it can take months, if not years...)." You need to work on the FEAR emotion. First of all, why are you worried that someone who truly loves you will leave you during hard times? You should re-evaluate why are you afraid of him leaving you. There may be more to it than the fear that lack of intimacy will cause it. Second of all, this will not last for years - it's up to you how long this will last. Work on the fear first and rest will follow.

Good luck, you got this!

 

Thank you Patrisia, this is really helpful and encouraging ! You're right, I need to work on the fear...

When you say you paid no attention to it, does it mean you just kept having sex even if it hurt like hell ? Or did you gradually increase the frequence and, uh, pressure ?

 

Yes, gentleness but also, at the same time, fearlessness - you eventually get tired of it ruling your life and realize you cannot go on fearing it.

 

Hi Ludmilla,

I suffered with vulvodynia and a host of other TMS symptoms for years. I got to the point where I had given up on ever being able to have sex let alone enjoy it. Thankfully I made a full recovery but it took time and I certainly was not able to take the push through the pain approach that many other TMS suffers are able to do.

For me it was about addressing areas of my life and personal character traits (perfectionism, goodism etc) first to allow my symptoms to reduce. Then it was a case of rewiring my thinking about what was causing the symptoms. Finally it was a process of gradually reintroducing activities back into my life that I had stopped doing, including sex. At one point my symptoms were so bad that I was unable to walk for 3 years. If I can recover to a point where sex is not only possible but pleasurable too, I believe others can too. Please feel free to ask me any questions you may have or to send me a message directly to my inbox.

I know living with vulvodynia is so so tough but keep hope alive that you will come through the other side of this. It is possible!

Best wishes,
Kathryn

 

Hi Kathryn,

Thank you for your kind answer and your encouraging story ! I can have sex now so my symptoms are much less hard than yours were ; my boyfriend is really supportive so I feel better in this area. I had some testing tone and I have not enough good bacteria (Döderlein flora), which seems to be the cause for the irritation. I tried some topical treatments (vaginal probiotics, creams) and it has only had a little soothing effect. I'll be starting a herbal treatment in September (I'm currently training in herbalism). I know this is physical treatment, but I'm also working on the psychological side of it and the herbs I'm gonna take include some that are good for the nervous system. My anxiety is definitiley the root cause of my physical issues (including, I'm convinced, of PCOS).

Would you care to elaborate on the other TMS symptoms you had at the time ? Did you stop all physical treatment ? What was the most important thing that helped you get better ?

 

Hi Ludmilla,

Thanks you for your reply and sorry for the delay in responding to you.

In answer to your questions, in addition to vulva and clitoral pain, I suffered with back pain, sciatica, interstitial cystitis, neck pain, jaw pain, eye pain, IBS, stomach pain and vomiting, tinnitus, Achilles’ tendon pain, burning in my hand and foot...and probably some of other symptom I have since forgotten about too. They have all gone away with TMS healing, although I do get the odd symptom flare up when my life gets out of balance. These soon pass when I make the adjustments necessary.

I stopped all physical treatment during my TMS healing journey. I previously had tried acupuncture, osteopathy, visited a chiropractor, physiotherapy, homeopathy and tried pelvic floor therapy too. None of these made any lasting impact on my symptoms and some made them worse. I know some women with vulva pain find pelvic floor therapy very useful, but this was not the case for me. Choosing to take the chance that there was nothing physical wrong with me, that my symptoms were indeed TMS and talking to my brain saying ‘the pain is benign there is nothing to fear, they are due to your repressed emotions’ was the key point in beginning my healing journey.

In addition a to this new way of thinking about my symptoms, I found doing EFT with a wonderful lady named Nancy Morris very helpful. Nancy helped me process some past emotional hurt. She was warm and kind and so wise, she helped me have a safe space to explore my emotions and she gave me some much needed encouragement, teaching me to believe that I was indeed loveable and that I had worth.

In addition to EFT I read a number of books around perfectionism, codependency, self-compassion and resilience. This along with some general therapy helped me to identify behavioural patterns created in my childhood which were causing me to spend too much time in flight or flight mode and not enough time in rest and digest (where the body can relax and restores itself.)

I also did something called Mindy Calm by Sandy Newbigging which helped me to reconnect with my body. I began to speak to myself with kindness rather than criticism. Each day I would tell myself ‘you are loved, you have value, you have worth’. Self kindness and self care are so important and so healing to the mindbody.

In addition to this I met my now husband who enabled me to make a very dramatic living situation adjustment, moving out of the family home I shared with my parents and sister who was very mentally unwell at the time. This new living situation was a key part of my healing as it provided me with a sanctuary of peace, love and support.

Once my symptoms began to ease and I was able to walk again (and for me my recovery was shaped like a lightening bolt rather than linear) I began to gradually introduce activities I had stopped doing (like riding a bike, wearing trousers, having sex). I had to decondition myself from my body expecting to have pain when doing these activities as every time I introduced something new TMS would use this as an opportunity to try and gain the upper hand again.

For me, rather than one thing being the key to my healing, it was a holistic approach that brought health back to my body. This included changing my living situation, creating boundaries with other people in my life, working through past and present emotional hurts, learning to adjust my thought patterns and ways of approaching life that were causing tension in my body, reconnecting with my body and reprogramming my brain in the way it thought about and reacted to my symptoms.

If you would like me to expand on anything I have mentioned, please let me know. Also I provided some very detailed answers around my healing to a medical student doing her thesis on vulvodynia, so if you would like me to share those with you people just send me your email address to my inbox.

I hope my answers are of some help.

Sending my best wishes to you.

Kathryn

 

Wow, this is really detailed and helpful, thank you so much ! Perfectionism and issues with self-worth, that's what I'm struggling with... I've seen a psychotherapist who really helped for a few months, I decided to make another appointment next week. I was brought up by a Catholic mum, who though well-meaning and loving put a lot on pressure on me to be a perfect, pure child, and by a father who loved me too but had really frightening bouts of anger. I ended up leaving religion at the age of 18 because of the OCD it gave me (compulsive thoughts that put me in a depression for some time, as I was convinced I was some kind of monster that would never deserve to be loved). I feel like TMS is just a kind of "in the body" OCD... I do not think anymore I am a monster but I definitely tend to feel "less than" a lot.

I'm convinced that PCOS and vulvodynia (both conditions my sister has too) have their roots in my conflicting feelings about femininity and sexuality as I grew up. I remember, as a little child, watching other girls at school and wondering why I was not like them. I never was overweight, but I saw myself as a kind of big potato with no grace, if that makes senses (this is hard to explain since English is not my first language)... Then feeling so, so ugly because I had prognathia and some kids would pick on me (got operated on, my jaws look normal now). Feeling unable to even kiss a guy for so long, despite some opportunities ; I would always run away after two or three dates, even though these guys were really nice and cool ; and then obsessing about the fact that I would soon be 30 and still a virgin (which obviously won't be the case). And now I'm very much in love with this great man and I feel like I'm not a real woman because of PCOS and vulvodynia...

Now, to be clear, I feel a million times better than I did even half a year ago, before finding Sarno, seeing my psychotherapist and meeting my boyfriend. I've changed a lot and I know I have to think about this to get even better. I've challenged myself in ways I didn't think were possible for me, like doing rock climbing with my bf when I've always been afraid of heights and was supposedly fibromyalgic.

Anyway, this has become quite a rant, so I will stop here and say thanks again ! I'll pm you my mail, I'm very interested in what answers you provided to this medical student.

 

Firstly I just want to say your English is amazing. Please don't apologise. I am so impressed!

Secondly, I can relate so much to the things you have said. I too was brought up in a Christian family and felt a lot of pressure to be good and perfect for much of my childhood and early adulthood. In recent years I have re-examined my view of God and now believe He is kind, loving and forgiving, I am no longer afraid of judgement but rest in forgiveness and acceptance instead.

Like you I also have PCOS. I too have felt less than as a woman and have had to talk through those feelings with a psycho-sexual therapist which really helped. I thought because I have PCOS I might struggle to conceive however 2 years ago I gave birth to a beautiful baby girl. Becoming a mum has certainly challenged me due to my struggles with anxiety, perfectionism, codependancy and feeling like it's not okay for anyone to ever be upset; beliefs that are so hard to cope with when you have a crying baby! However having my daughter has challenged me to grow further and further reassess the unhealthy beliefs and values I grew up with.

I just want to encourage you to continue to work on your anxiety with your therapist and the unhealthy beliefs/pressures you were surrounded by growing up. Keep challenging those thoughts and feelings. You don't have to carry them through the rest of your life with you. You can learn a new way of being gradually, over time. I believe this will be key to your healing too.

You are so worthy of kindness, love and care and I encourage to give that to yourself as well as looking to others too. You can do this! Will check my inbox now.

 

Your kinds words almost brought me to tears. I guess being so emotional is linked with TMS . Our stories seem similar in many ways, I'm happy for you that you found your peace and that you ended up with the family you wished for.

 

Thank you for expressing your happiness for me. I believe you can overcome this too!

 

Hello Kathryn,
I'd love to chat with you and hear a bit more about your story. I'm just beginning on this TMS journey but have had symptoms for 20 years. I was wondering if it would be possible for you to email me perhaps? k.foot@protonmail.com, or if you wouldn't mind sharing more details of what you were experiencing and how you overcame this that would be amazing too.
Many thanks, Kate

 

Hi Kate,

Just to say I have sent you an email. Look forward to hearing from you at some point.

Kathryn