A situation that may or may not be TMS- any thoughts

Mala

Mala

Beloved Grand Eagle
I have had this pain which is in the area of my bladder /vagina since Nov 2012. During a short holiday in China, I went to the beach during a storm. The waves were extremely rough & there was even a rope that was extended out to sea for people to hold on to. i remember playing with my niece & nephew & this huge wave just knocked me down and I felt all this sand & water go up inside me. It was very very forceful.

2 days later I started having a burning pain & discomfort after I would wee. Over the course of the next month it got worse. Urine analysis done 3 times showed no bacteria.


Had one cours eof antibiotics with no significant improvement.

3 gynecologists suspected it could be fibroid related. I have a 6.5cm X 6.5 cm fibroid situated very low near the bladder/cervix area which they think (but are not 100% sure) maybe pressing on nerves and have recommended a hysterectomy. I had many fibroids removed 15 yrs ago so there is too much scar tissue.

Urologist did all tests & there are some findings like a
-'tiny peri urethral echogenic legion measuring .26cm on the left side of the proximal urethra' &
-'echogenic material filling a tiny peri urethral gland or less likely urethral diverticulum' which the dr does not think significant.

Anyhow the pain is just as bad and in fact on most days even worse. I have noticed a few things

The burning & pain are always worse after I wee. Its now come to the stage where I can't differentiate as to whether its in the vagina, vulva, bladder or urethra.
There is a heaviness and what feels like swelling in the area.
Morning is Ok but tends to get worse as day goes on.
There is an increase in pain proportinal to the amount of activity.
Sometimes I can't think straight its so bad & sitting is difficult. There have been times I have felt so awful that I have even contemplated bad thoughts.
I have been keeping busy , even started doing yoga which has made it worse but am keeping it up despite the pain.
I think drinking wine makes it worse but I'm not sure.
I really dread going to the loo for a wee.

On my last visit to the gyne 2 days ago , he strongly recommended surgery to remove fibroid & I have tentatively booked for 26th this month but I am unsure but its been going on so long now.

Would appreciate any thoughts on this. Am happy to answers any questions .

Thx so much.

Mala
 
Hi Mala,

I too have had the identical bladder and vaginal symptoms you are describing. I am no stranger to TMS and was diagnosed by Dr Sarno for neck and shoulder pain over 20 years ago. I did not have any back pain, nor did I have any structural issues like many TMS suffers seem to have. I had a book cure for my neck and shoulder pain that quickly returned upon my leave from disability and my return to work. I was in counseling with one of Sarno's therapists and my neck and shoulder issues were cured. My TMS never returned back to either one of those areas in all of these years, but I have had panick attacks and other issues that were related to TMS. I still get anxiety and we seem to co-exist as frenemies.

I don't recall exactly when my bladder started to act up, but recall having issues on and off all of my life. My first "infection" was around 10 years old. I was never cultured but was given antibiotics which seemed to have given me relief at that time. I also had issues with Candida and have been diagnosed with being severely allergic to it. I can hear the eyeballs rolling as this is so not TMS, but I do believe explaining my journey may give you some help.

My symptoms were exactly like yours, pain and burning which was isolated to my pelvis, vagina, and bladder. The only relief for me was actually lying down which presented a host of issues as I certainly couldn't live lying on the flat of my back! I had to earn a living and I work in finance which requires long hours of sitting on what felt like broken glass. At one point I saw seven Gynocologist and four Urologist in a matter of eight months and they were stumped. At that time the Internet was unlike it is today...AOL dial up hell. Somehow I did find out about Intercystial Cystis and saw a specialist who did a uroscope and saw that I had a compromised lining of my bladder and pin holes which actually bleed microscopic amounts of blood. I test positive for blood in my urine regardless of whether I am having symptoms or not. I also had pelvic floor dysfunction which I believe is TMS as the pelvic muscles are not relaxing. There is biofeedback therapy which some women sware by to help the condition and claim it relieved their pain, I had no success with it. I was helped by a very low dosage of Valium which calmed the spasms and helped me sleep through the night as I had to go to the bathroom every hour and could not sleep. My quality of life was zero as I was physically and emotionally exhausted. My life was stressful and I returned back to my TMS counselor who did not think my bladder problem was TMS. I honestly can not say that I still have a clear answer to that question after all these years. I will say that stress did make it worse. Wine also put me in agony and I gave up drinking any alcohol for several years...once again this is not TMS philosophy. Many folks would say do the opposite but after a while with no relief, I gave up.

My journey was long and no one thing helped me but over time with trial and error and also not allowing it to rule my life, it was manageable then finally gave up, just in time to move to my stomach. It just did not respond to any of the conventional TMS work or counseling. I do believe there was a TMS component to it as it seemed to have gone away around the exact time as my nausea and stomach pain became my new demon. In fact the new manifestation so overwhelmed me that I did not even realize that my IC and vaginal pain issues were gone for over two months as the new stomach syndrome was that much of a distraction. I was actully distracted by my distraction.

I know how you feel and what you are experiencing. It is tough to feel so alone and misunderstood and not have clear cut answers. I can not tell you what you should do about your surgery or if what you have is TMS, but I am here for you and can say that things will definately get better. I too experienced your symptoms and they did over time become bearable to the point of being able to fully enjoy my life and my marriage. Try and be patient and do not get pulled in by the pain. Even if this is not TMS, staying calm and focused will help any painful condition. Continue to practice the techniques as Walt suggested, but also continue to research your health issues for options that you are comfortable with. I have been on both sides of the fence in knowing that my pain was totally related to my repressed emotions in two different points in my life, and not knowing at all during another. The later was the most challenging as the doubt and questioning were so draining.

I am new to the forum but an old timer to TMS. My stomach is finally feeling better after two years of misery. I do a great deal of reading and have also dialed into the Tuesday night calls. This forum has been a godsend for me and I am positive that it has had a direct impact on my ability to get control of my stomach.

Please keep in touch and stay well. Be at peace with your decision and don't be discouraged.

Beach Baby
 
Mala, I'm donning my old nurse cap here for a moment…did they actually do a CULTURE and sensitivity on your urine or just a dipstick test looking for evidence of an infection? That test would take at least 48 hours to see if something grows…and then the sensitivity part would tell which antibiotic would be effective.

I'm always amazed at how many times simple stuff like this is overlooked in doctor offices. The beginning of your pain a few days after the ocean wave makes me wonder if you picked up some bizarre bacteria that's flying under the radar.

On a different track…I would encourage you to spend some time in meditation and ask your body what it thinks you should do. Yeah, I know it sounds crazy. I've been using this technique and it's been helpful. Or I'll ask a body part what it's trying to tell me through the symptom I am experiencing.

I hope you are pain free soon. The type of symptoms you're experiencing are so unpleasant! Please keep us posted.
 
Dear Beach Baby & North Star, thank u so much for responding & I apologise for taking so long to reply. I've had a few horrible days.

Beach Baby I'm really please that yr neck pains resolved so quickly. I'm afraid that along with my problem 'down there' the neck shoulder pain have come back. Probably a result of tensing up the muscles.

Its very difficult for me to pin point the exact area of the pain. I don't have an urgency issue but sometimes the pain seems to be deep in the pubic area & sometimes it feels like its more down below. I don't get why the pain is worse after I pee, nothing during. Having the fibroid which is supposed to have stopped growing after menopause is also a cause of worry.

I had all the tests done- a cystoscopy, ultrasound, cat scan & the only things that showed were the 2 things I mentioned in my first post which the urologist did not think were significant & when I mentioned IC to the urologist, she said no since i don't have the frequency issue. There was no inflammation in the bladder. I do find it is sometimes difficult to sit & sometime not. Activity seems to make it worse. Sometimes I eat spicy food with no trouble & alcohol too so I can't really say if those 2 things aggravate it.

If my neck is acting up then I feel the pain less & vice versa.

North Star, thx for the advice. I have just been to my GP & asked him to do another urine test . Although my previous one was pretty OK, there were a few pus cells & I'd like to see if anything has changed.

Will let u know how things progress.

All the best

Mala
 
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Mala, How frustrating this all must be for you! I am so sorry! Any chance you can tune into tonight's call with SteveO? I can't help but wonder if you've got some serious TMS flaring up since so many things have been ruled out.

Please keep us posted on your progress.

Gentle hugs,
NS
 
So fascinating to read this...when two years later, many of us and our doctors believe IC is TMS... and the gritty lining in the bladder caused by tension and rage, unresolved grief.
I was diagnosed with IC the moment it became a diagnosis, and visited this thread tonight due to a flare up of intense pain.
I know all the things to do for TMS. I have had huge feelings the past week. Today is the first anniversary of the death of my first dog. He was my soul mate, more so than any human.
I need a good cry.
I will have one but wanted my tms cure first. I know this is tension, I know it is my unconscious spilling over.

I just need to allow it to spill in constructive ways.
Thanks for being here. It will pass soon. Always does.

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