Pelvic Pain

[Misha]

Hi Everyone,

Three months ago I developed pelivc pain and was diagnosed with pudendal neuralgia (PN) because my pain is in the distribution of that nerve, worse when sitting and only on one side. Ultrasound and MRI showed nothing. This was pretty terrifying as there is very limited success treating this chronic condition and many forums full of people suffering horribly. My doctors offered nerve pain meds but I declined because I wanted a cure not a cover up!

As well as being terrified, I was also confused because nothing had happened to cause damage to the nerve. No accident or recent childbirth etc. (My doctor said 'sometimes it just happens for no reason'). I had had some weird abdominal pain on and off for while which I was quite worried about but no cause could be found. I asked my doctors if stress could be the cause because I was feeling very overwhelmed, exhausted, frustrated and a little depressed with two young children and my husband frequently away on business. They said no. It could make it worse but was not the cause...

After some research, I started seeing a Pelvic Floor Physiotherapist in the hope that if this was stress induced I could 'undo' these muscles and end the pain. That wasn't particularly helpful as I don't think she really understood the condition and was confused that my pain was only on one side (left) so she thought it was a nerve problem rather than muscle tension upsetting the nerve. (I must admit I keep coming back to this point myself - why only one side if this is TMS and relates to muscle tension?)

Hours of internet searches brought me to Abigail Steidley and through her, The Mindbody Prescription. I also just received The Great Pain Deception. I was initially very excited by what I read and felt like this had happened to open my eyes to all the great things I had around me and help my find future direction in my life. And I certainly fitted the personality profile for TMS e x a c t l y .

But now I feel stuck. I have been trying to feel my emotions (although ironically I've always thought of myself as an overly emotional person) and not hide them away. I've been journalling and even tried NET therapy but feel like I can't 'feel' any change, either emotionally or physically. I think I'm stuck in a state of fear and 'What ifs?' - What if I never get better? What if I get worse and can't take care of my children? What effect will this have on my marriage (due to the location of the pain)? I try meditating and relaxation exercises but then I have to 'resume' real life and the peace evaporates. I keep waiting for a sign, like an improvement in pain as a sign it is TMS.

Any words of advice gratefully received

 

[JanAtheCPA]

Hi Sara, and welcome to the forum. I hope that you can receive some helpful replies here - everyone has a different experience with TMS and that means that there are many different methods and resources for recovery.

I was initially very excited by what I read and felt like this had happened to open my eyes to all the great things I had around me and help my find future direction in my life. And I certainly fitted the personality profile for TMS e x a c t l y .

This is a good start! You are not alone in being stuck, believe me.

There may be things you've done that you haven't mentioned, but off the top of my head here are some ideas:

1. You might consider psychotherapy with a qualified mind-body therapist who can help you with the repressed emotions that we ALL suffer from childhood. It's a Freudian thing. Dr. Sarno (and most of us) believe that Freud got it right. I had a perfectly secure and pretty functional childhood with two parents and no traumas, but I was able to discover via my "inner child" that as a very young child, I was socially awkward, isolated, anxious, and prone to OCD. Learning to nurture and comfort the little girl in me was a big turning point in my recovery.

2. 100% belief is essential, as is flexibility. I still use the term "TMS" but in reality, I abandoned the "muscle oxygen deprivation" theory a long time ago as unnecessary to my understanding of the mechanism of brain-induced symptoms. Dr. Sarno himself knows that TMS goes WAY beyond muscles - and this is easy to accept once you understand that the brain is in charge of every single physiological process in your body. And that your brain is capable of producing any symptom it wants for its own primitive and dubious reasons. Neuro symptoms are extremely common in TMS.

3. Self-awareness is also essential. You have to be willing to be totally honest about your real emotions - not the shallow ones, but
the deep ones that scare you (and that scare your brain so much that it will do anything to keep them repressed). We all have them.

I think I'm stuck in a state of fear and 'What ifs?'

4. "What If?" is one of the most common and insidious messages that TMSers hear from their own brains. The good news is that you are hearing it loud and clear. The next step is to take charge and change those messages - which means that you need to believe something different. When we talk about mindfulness, this is part of what that is. Mindfulness is more than meditation - it's recognizing the inner messages and changing them.

A couple of suggestions for you:
If anxiety is an issue for you (and if you have TMS, it is) read Hope & Help For Your Nerves by Dr. Claire Weekes. It's a little book, available everywhere, easy to read and very compassionate, and it has helped a TON of people with anxiety, myself included.

Start doing either the Structured Educational Program or the Alan Gordon TMS Recovery Program on the wiki. I tend to think that Alan Gordon's program might be good for you, because he is really good at helping us to understand the real emotions.

Hang in there, and you will find the way to recovery that works for you!

~Jan

 

[Walt Oleksy (RIP 2021)]

Hi, Sara. I echo the excellent reply from Jan.

One of my favorite things when I am anxious about anything is to tell myself "I can do this. I can do anything I set my mind to do."
It's such a powerful mantra. A great friend says: I can do this. It's a piece of cake." I use that often, too.

I sure wasn't in the mood for housekeeping this morning, being 85 and feeling kind of crappy because it's gray and rainy outside,
but I went ahead and vacuumed the house and gave the kitchen floor a good cleaning and mopping. No pain and I feel good for having done it.
Good exercise, too.

 

[Misha]

Hi Jan, Thank you for your detailed reply. I was exactly the same type of child (yet had a secure childhood too) which is interesting and still do suffer from mild anxiety. I have recently read Weekes. Unfortunately there are no TMS therapists or doctors remotely nearby so I'll look into the structured programs you suggest. I understand what you are saying about changing the messages. I'm just reinforcing things negatively in my brain right now which needs to change.

Walt, thank you for your kind advice too. This will take determination. I've enjoyed reading many of your posts

 

[Abbo]

Hello Sara, even though I hear you are suffering, I am so grateful to find a more recent post on pelvic pain. I have developed the burning perineum and rectal and vaginal burning also. I have been on the program with a therapist for three months now. I originally started with myofascial pain symdrome But now I have increased pain in the peineum. This all became more intense when we explored my childhood memories particulRly most vivid memories of my father and mother. I hated doing this because I felt I was being disloyal to them and I always justified their behaviour as an excuse for my dad being ill and my mother being very anxious and worried about him. I now wonder if I had hit on the emotions I had been trying to suppress/acknowledge all my life and that is why my pain has become almost unendurable. I hasten to add another dimension is I may have developed pain pathways following complications following a hysterectomy when the suturing was roughly done and had to be corrected. Who knows? any replies would be so gratefully accepted.

 

[she333]

There's a Facebook group you can join called chronic pelvic pain - the mind body connection where we only talk about mind body approaches. You can also use therapy through the pain psychology center via Skype. They don't accept insurance, but I've been able to use my FSA account for it. This can be a really slow slow process. I find myself checking in with myself to see how I'm doing. However this is just reinforcing symptoms as its me focusing on them. I know it's really hard but try not to do that as much as possible. I think meditation is a really good idea too. We can build new pathways in our brain. I think it can just take time to stop receiving messages from neural pathways we are no longer reinforcing.

 

[Abbo]

Thank you Sara for your reply. I will certainly investigate face book on chronic pelvic pain. I am a member of face book but I have never used It as since I joined I have been in too much pain to concentrate on finding friends etc. I ave just had a discussion with my therapist who is such a kind knowledgeable (especially where TMS is concerned) he is so understanding of my pai and is guiding me towards recovery. I find it very slow and in fact my pain shifted focus and increased which I found almost soul destroying considering I was working toward getting better. However, I will not let TMS beat me I will pick myself up and continue. I do hope you are feeling better too.

 

[Misha]

Hello Sara, even though I hear you are suffering, I am so grateful to find a more recent post on pelvic pain. I have developed the burning perineum and rectal and vaginal burning also. I have been on the program with a therapist for three months now. I originally started with myofascial pain symdrome But now I have increased pain in the peineum. This all became more intense when we explored my childhood memories particulRly most vivid memories of my father and mother. I hated doing this because I felt I was being disloyal to them and I always justified their behaviour as an excuse for my dad being ill and my mother being very anxious and worried about him. I now wonder if I had hit on the emotions I had been trying to suppress/acknowledge all my life and that is why my pain has become almost unendurable. I hasten to add another dimension is I may have developed pain pathways following complications following a hysterectomy when the suturing was roughly done and had to be corrected. Who knows? any replies would be so gratefully accepted.

Hi,
The above reply was from someone else I looked into that Facebook group and felt it contained a lot of people unsure if they had TMS so I left, as it was pretty discouraging just IMO but do what feels right for you.

I have found reading Eckhart Tolle to be very helpful. Also, Steve Ozanich - The Great Pain Deception.

Here are a few success stories that might motivate you:

(Sometimes the success story is the person posting in reply to a question, so you have to read through. Sometimes the person commenting, later has complete success which you can see in one of the lower links etc. These are all pelvic pain. Lots of people who say they are 95%, go onto 100% if you see them post later. I haven't put all the posts though but you get the idea. Some of the success stories come from the Pudendal Hope website. STAY OFF THAT SITE except to read these stories. It's pretty miserable there with so many people firmly believing they have no way out so many do. That site has many member who advocate surgery as the only way out, although I'm sure they are only genuinely trying to help, it certainly wasn't helpful for me!)

http://www.tmswiki.org/forum/thread...-back-pain-recognize-it-for-what-it-is.10908/

http://tmshelp.com/forum/pop_printer_friendly.asp?TOPIC_ID=8010

http://www.pudendalhope.info/forum/...&start=0&sid=bddb432d64427303c4f70f97507eaac8

http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=5714

http://www.pudendalhope.info/forum/viewtopic.php?f=74&t=6428

http://www.tmshelp.com/forum/pop_printer_friendly.asp?TOPIC_ID=2863

http://www.tmshelp.com/forum/pop_printer_friendly.asp?TOPIC_ID=7088

http://www.pudendalhope.info/forum/viewtopic.php?f=74&t=6322&start=0

https://www.psychologytoday.com/blog/owning-pink/201304/the-most-important-part-your-health

http://www.unlearnyourpain.com/testimonial-21




Also, I really like these:

BALTO is amazing And ACE has great tips:
http://www.tmswiki.org/forum/threads/healed-for-10-years.3556/
http://www.tmswiki.org/forum/threads/key-to-healing.3577/

http://www.tmswiki.org/forum/threads/tms-healing-mistakes-made.2730/

Have you looked up:
https://abigailsteidley.com

http://www.coastsidevipassana.org/andreasnotes/mindfulnessofemotions.pdf


Good Luck

 

[Abbo]

Hi Sarah,
Another huge thank you for replying to my post. I realised a day or two after posting it that I had put the wrong name on it! I won't put myself down, (the inner bully) but I do feel my mind is a bit scrambled these days! It could the TMS affecting my brain!
Thank you for all the advice and support links you have sent me. I do listen to Claire Weekes recordings on anxiety and sensitivity. I do find them most reassuring and comforting.
My therapist called this morning and he confirmed that my severe increase in burning symptoms were in his opinion 99% down to me writing down memories of my mother and father. I always considered that I had a good, safe childhood but when confronted with memories I realise as a little one how certain incidences had affected me. I was filled with sadness, hurt and fear. He suggested I open a door to infinity and let my parents and sister go through that door in a whoosh then close it behind them and as they (my parents) are dead I was able to do this.
I am hoping now to "let go of the past and forgive easily" (affirmation) and find a way of healing. What I am trying to say is we don't really know how much our experiences in the past can affect us. I for one would never have believed this as I focused mainly on the "good memories" of my mum and dad as there were of them than hurtful ones.
I do hope you are begining to recover. I do feel this pelvic burning is not only extremely painful but also embarrassing for me. I am glad " I bit the bullet" and got in touch with the forum.
I wish you well and a full recovery in the near future. Please let me know when you have beaten this TMS.

 

[Sean]

Hi Sara, I have PN as well. Nobody could diagnose as such but it it has the standard symptoms. After trying lots I approached I discovered The Mindbody Prescription and The Divided Mind. PN turns to TMS and responded to this realization and a mindset that I will 'fix' it. So...I tell the pain to go and I try to sort the emotion or reason for the intense repressive reaction...basically my long term goal is to get back to the state I was in before TMS...as others have said...believe it and battle!!!! Don't stand for it!!!! Good luck
Sean