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Posted By : Ziggs - 8/20/2017 1:13 PM
My appointment is 6 or so months away (I'm on the NHS) and just wanted to talk to someone with endo..
I'm a bit worried I may have it? It could be something entirely different!

Bit of history broken down:
-I'm 17 and have always had painful periods since I was little.
-This past year the pain is always a mild-moderate cramp all month and then gets worse the week or fortnight before my period.
-Sometimes stabbing pains
-Day or two days before my period pain goes all down my legs even to my feet and up my back.
-The pains pretty much stop halfway through my period and start up again when it finishes!(This really confuses me!)
-My periods arent too heavy, pretty normal actually.
-I had an ileostomy formed because of my ulcerative colitis 10 months ago. (Another reason for bad cramping may be a bit of bowel left stuck somewhere??)

I'm just worried about what this could be! I have a few things else going wrong with my health, woohoo.. But this is priority atm.
I said no to going on the pill until I know what is wrong with me.
If anyone with endometriosis could reply would be so helpful - do you think my symptoms suggest it? My GP said it could be that or the bowel things or something else.

Posted By : (Seashell) - 8/20/2017 2:02 PM
I would suspect your colon surgeon would have definately noticed if you had any evidence if endometriosis during your surgery for resection of your colon. Endometriosis is visible to any surgeon. I would not place endometriosis at the top of your concern list.

Having an ileostomy myself and having had 3 open abdominal surgeries I can speak to the many and varied ways that adhesions/scar tissue present themselves. I would put at the top of the list of possible contributing factors causing your varied pain adhesions/scar tissue. Adhesions/scar tissue that is tethering itself to your abdominal and pelvic wall - if not also your small intestine and pelvic organs.

Adhesions can be wispy like a spiders' web or dense like a thick rubber band.

Try doing some gentle yoga postures and yoga stretches to begin to mobilize the soft tissue and adhesions of your abdomen. You can expect to feel stiffness and resistance. You may even feel an adhesion "pop" and release its anchored holding. All are normal and beneficial.

You can also look into massage. Deep tissue massage is immensely helpful in releasing and mobilizing adhesions.

Adhesions do cause secondary problems after one has healed from the initial surgery. Abdominal surgery, in particular, is prone to scar tissue development. I have had two small bowel obstructions due to adhesions. Adhesions are the gift that keeps on giving.

Look into some beginning yoga poses and deep tissue massage. I think you will find some relief.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 8/20/2017 2:07:03 PM (GMT-6)

Posted By : Ziggs - 8/20/2017 3:50 PM
Thank you very much for your detailed reply, I had laproscopic surgery which was why they didnt mention adhesions much and were not too concerned about them.
Have been lucky to only have minor frequent blockages that don't need intervention and resolve in a matter of hours.
Very little stretching and movement near my abdomen usually gives me severe abdominal pain which leaves me in bed with a heat pack but I understand adhesions get worse over time so you must stretch.
Was worried at the mention of more surgery to have a look at whats going on inside.

I will have a go,
Thanks Seashell

Posted By : (Seashell) - 8/20/2017 7:54 PM
Your medical team is doing you a disservice by not considering adhesions as a primary source of your pelvic pain.

Laproscopic surgery is surgery. You may not have to heal a long vertical incision, but the same resection "work" of your large intestine was performed with your laparoscopic complete colectomy as is the case with an open approach.

That you have/had ulcerative colitis indicates a high level of inflammation and systemic inflammatory blood markers prior to your surgery. Inflammation of your large intestine was severe enough to warrant an ileostomy. Inflammation does not magically disappear after surgery for ulcerative colitis. Inflammation is a natural accompaniment to any healing process. The post operative inflammatory state lends to the development of adhesions. Adhesions are not inherently bad. Adhesions are the body's natural response to wound healing that has continued beyond the point where it is advantageous.

So, yes . . You will have adhesions. And I betcha' that adhesions/ scar tissue is the root source of your persistent pelvic pain.

Simply look at the corollary. You mention that your pelvic pain has been present and annoying for about the past year. Your colectomy was 10+ months ago. You mention how the pain is worse with body movement and radiates - all common findings with adhesions.

Adhesions are scar tissue that tethers or adheres to the fascia of
the abdominal wall; tethers one portion of the small intestine to another segment of small intestine; tethers to the fascia coverings of organs in the abdomen and pelvis (stomach, spleen, ovaries, Fallopian tubes). The pelvis is particularly affected because the pelvis is a small and contained space (about the size of a tea cup) through which essential nerve and vascular branches pass on route to innervate the lower extremities. These scenarios hold explanation for your increased pain during your menstral cycle (when the endocrine demands of the ovaries are heightened and the ovaries are enlarged during ovulation) and your sensory symptoms in your legs and lower back.

The good news is that adhesions are more apt to form during the first 8-10 months post surgery. Adhesions are less likely to develop after the 10 month mark.

I hear you when you write that stretching causes your pain to intensify, sending you to bed with a hot pack. But stretching and connective tissue mobilization is the prescription that you need to ease the severe pain that you do.

Start slow. Listen to your body. Talk any one yoga pose or posture to a point of mild discomfort. Hold the position for a solid 60 seconds (or longer to 2 minutes as tolerated). Slow and sustained stretching is the method you need to adopt. Ballistic or bouncy-bouncy or rapid and random movement is not advised. Ballistic movement causes micotears on muscle and connective tissue that is damaging and that lends to the formation of more scar tissue.

Massage, especially deep tissue massage, can be quite restorative in easing the bind that is characteristic of scar tissue.

I am in the hospital now, actually, with a complete small intestinal obstruction due to adhesions. I am typing on my iPhone. This is not my first rodeo with adhesions nor will it be my last.

Personally, I think you can ease your concerns of endometriosis. Your surgeon would have seen visual evidence of endometriosis during your lapropscooic procedure.

A referral to a physical therapist for deep tissue mobilization and an individualized stretching program would give you a guiding hand. There is a therapeutic speciality called the Graston Technique that is particularly helpful in easing adhesions. The release of adhesions is analogous to untangling a ball of knotted yarn or clearing tall overgrown beach grasses or brushing a long-haired dog's matted coat.

I perform 30 minutes or so of yoga 1-2 times a day. Every day. Like brushing my teeth. But adhesions still affect me. As with other chronic health matters, do the best that you can do.

I sincerely hope that you begin to find your preferred method of stretching and tissue massage to ease your personal pain and distress.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Ziggs - 8/22/2017 1:39 PM
Sorry I thought I'd sent my e

Posted By : Ziggs - 8/22/2017 1:44 PM
Sorry I thought I'd sent my reply! Thanks so much for taking the time to reply whilst in hospital, I've been doing the stretches, hurts a lot but I will stick to it. Ill be telling my docs about it next time I see them.
I'm really sorry to hear you have another blockage. I hope you are okay and dont have to have surgical intervention.

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