Unhappy and not sure where to turn next

[DellaDella]

Hello, I've been suffering from Endo for years. I have had my womb, tubes. ovaries and appendix removed. I am still suffering with pain and inflammation on my right hand side. I have had adhesions done also. I had these symptoms before I had any operations done. I am very confused and disheartened with it all. Just wondered if anybody else as problems same as mine and how they are treating it.

[AllWeNeedIsluv]

Oh my love im so so sorry for your pain it really is hard especially when you've done everything that's supposed to get rid of the pain. Even when having adhesions removed they can still come back my gynae wouldn't sterelize me coz iv had adhesions on my bowel that were cut in an op but she stated they most likely would have gone back. So that could be the reason of your pain also I've seen so many woman have hysterectomies but they're still in pain. Do you know where your endo was and how was it treated ablation or excision? X

[DellaDella in reply to AllWeNeedIsluv]

The Endo was behind my womb and one year later I had got it to my left ovary and year later they removed my right ovary. This was done when I was 28years old. My last op was for adhesions which I've had done twice before and that was when I was 40 years old. They also said all the Endo had gone, but I still was suffering after it was done. Not sure how it was done. I am now a youthful 69 year old, so people tell me! Thank you for replying and sorry you are suffering too.x

[Skye22]

So sorry to hear about your pain.

I have very similar health problems, endo, hysterectomy (aged 26) and removal of ovaries.

For about a year I was fine then the pain returned but much worse. I had multiple surgeries for separation of adhesions and in total 13 surgical procedures.

I have now been diagnosed with colitis, and have adhesions on Bowel, bladder, abdomin and pelvis.

Due to all the surgeries I now cannot have any more as it is too great a risk for complications.

The hardest thing for me was acceptance, and how to have some semblance of a normal life.

I have a very good medical team to help me manage my symptoms and a wonderful husband who Is my full time carer.

I try to focus on the positives and when I have a good day we go out a walk or pre-covid out for lunch.

I no longer search for reasons as to why this has happened, but if I knew then what I know now I would not have had so many surgeries.

I wish you the very best of good health and stay positive.

[DellaDella in reply to Skye22]

Thank you for your reply it's good you can be so positive and I have taken on board everything you have said. Yes knowing what I know now I would not have had anything done. One specialist advised me at the time not to go through with it, I just thought I had to have it done to get rid of the pain. I wish you all the best also. x

[Pinky2233]

Scar tissue is tricky and a changing business. There is so little written about it and rules and possibilities are not lucrative so they are hard to find but they are there and the game or scar tissue is changing. My belief is that not enough people are demanding research and exploration in this field.

I would love it if anyone else who has experience with injections could write you to help. If you haven’t heard of it it is a procedure ( and there are many versions) to inject mostly anesthesia into the tissue to soften it and make it more pliable.

If anyone write in would love to know who did the procedure, what was injected and How Much, How Many times was it done. and was Pelvic PT used to break up the scar tissue).

In my opinion this is a ripe industry for medical growth needing funding. If a large scale organization set up to train and offer support strictly for breaking up scarring it would affect positively more people then ever thought, Most people are not offered any healing options only surgical “lets cut it out options”

Would love to know if there are any e-stim internal options or other tissue melting options and if not why aren’t there. Heating internal tissue there needs to be a protocal for softening other than just the Crystal wand and 30-40min of pelvic mobilization.

If anyone know of any would love to hear.

For external adhesions there is dry needling which is extremely effective.

For external vaginal adhesions anywhere,

So the proven concept in chinese medicine is called Surrounding the Dragon. In western medicine they have proven scars can be softened with trigger point injections and HydroDissection fron a euro gynecologists.

The healing process is to puncture to create new blood flow, new no scared cells can form with it new nerves and more oxygen.

In Hydro dissection the surgeon injects anesthetic as much I safe per treatment to plump up the tissue and soften it. Keep asking around til you find a doctor who can/ will perform this. They may call it pelvic trigger point injections. You could also just ask if the will inject anesthesia to soften the scars. Usually requires 6-8 sessions every 2 weeks.

It is paramount to find a highly technical pelvic pT who can then within 24hrs mobilize the tissue, Stretch the tissue and in advanced cases need deep tissue exploration of tiny adhesions that feel sharp to you and SHOULD ALSO FEEL SHARP TO THE PRACTITIONER. They will use advanced Herman and Wells tissue mobilization as well as Institute of Physical art Advanced Mobilzation techiques to release the tiny shaft adhesions that could be causing your pain.

Healing from pain is rarely linear.

Tissue my flare so have vaginal Valium on hand and chinese sleep herbs for depression and relaxation. ( test for allergies and work only with a professional)

Meanwhile, salt water to swim or soak in can be a nice Comfort

And Chinese herbs to sleep will help immensely.

I’m hoping anyone who has had pelvic trigger point injections or any procedure to soften tissue might write in here.

Meditation is great for calming oneself down don’t give up the hunt. There are marvelous people out there who are not only getting to the bottom of scars but finally getting under them to the bone to free us of the itch, pain and stabbing from entrapped tissue.

One day at a time!

[DellaDella in reply to Pinky2233]

Thank you for your reply. Lots of useful information to take in and think about,

[Pinky2233]

I’m seeing a lot of controversy on trigger point injections. To be clear all doctors can interpret injections differently.

Basic trigger point injections expand the tissue some but it seems offers some temporary relief but if it doesn’t put enough fluid in to stretch a wider area the benefit is not as thorough.

The goal is to stretch the tissue.

I’m hopeful others may know doctors/ Urogynocologists who do this for direct contact and research

I hope you feel better soon