Endo and pelvic floor dysfunction/ anismus?

Hey,

I was just wondering if there were any other ladies out there who suffer with endometriosis and pelvic floor dysfunction/ anismus?

After years of constant gastro and IBS type problems, especially chronic constipation, alongside a ridiculous amount of tests, I was finally diagnosed with pelvic floor dysfunction - particularly anismus at the start of this year and have already had a couple of biofeedback sessions. On diagnosis my gastro consultant referred me to a gynae for extra checks too as he wanted to be sure nothing else was wrong within the pelvic department - I was also suffering with painful periods and intercourse. I had a laparoscopy last week and it turned out I had endometriosis between my bowel and back, the left hand side of my uterus, bladder and pouch of douglas, which luckily was all removed while I was already under.

I have researched quite a bit online and there seems to be a quite a borderline link between the two, with endometriosis often causing pelvic floor dysfunction, especially with the pouch of douglas being behind the rectum, and just wanted to know if anyone else has been diagnosed with both conditions and if they believe there is a connection between the two as well?

My gynae doc said that my symptoms should improve now the endometriosis has been removed but I haven't seen a huge difference in the going to the loo anismus part yet, however maybe this is because it has only barely been a week since my surgery and I need to heal? Or could this be because my pelvic muscles have had to adjust to the endo for so long I will probably still need biofeedback to rectify the anismus? Or has anyone else noticed an instant difference and could these conditions just be separate?

Any help would be gratefully appreciated!

Thanks x

7 Replies

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  • 1 week after such surgery and your insides will be swollen and sore and not anywhere near ready for a normal bowel movement experience. I had a similar amount of surgery and it took 4 months before i was op pain free, 17 months before my bladder was working 'normally' and my bowel was and still is a tricky beast regards passing of poop and its 3 years post op.

    You really shouldn't expect to know how well the op has gone for at least 3 months. Your insides need a long time to heal and settle any swelling, and a lot of work has been done. Please be patient it is very early days at this point in time.

    Remember that everywhere you had endo causing problems is now replaced with surgical wounds ..causing problems.. while they recover, so much the same symptoms will still be there until you have healed.

    Pain killers used in hosp and at home can quickly cause constipation too, so do be mindful of drinking a lot more water than you usually take on board, and use laxatives orally and suppositories too if needs be to keep things moving. Taking hourly exercise like a walk round the house will help keep things moving too.

    If you are not as active as you were before surgery then cut down on the calories but still eat nutritious diet to help the healing but also to try and avoid putting on weight while you are less active and recovering.

    Having RV endo (recto vaginal) in the POD is the gap between the uterus and vagina and your bowel, not behind the bowel. It is very common as a location for endo.

    It causes mass of sticky old blood to get trapped there and this dents in to the bowel making passing a poop very difficult and takes quite a bit of jiggling about and squirming on the loo to by-pass that blockage.

    gynsurgery.org/ols/uploads/... is an illustration of how dented in to the bowel one of these POD masses can be. It's the black coloured area.

    The picture is on

    gynsurgery.org/topics/endom...

    and if you move down to 'images of rectovaginal nodules you can see actual photos of how much such masses can obstruct the bowel.

    There are a large number of forum members who have recto-vaginal endo, some have had surgery some still awaiting surgery.

    Using the search box on the green bar at the top of the page, they key words to look for are RV endo, POD, recto-vaginal, bowel endo, sigmoid colon endo etc.

    When googling - rectovaaginal endometrosis is the term to search for. There are dozens of informative pages on this subject.

    Some from my collection of fave websites to read through are

    mjwcooper.com.au/patient-in...

    news-medical.net/news/20120...

    danmartinmd.com/rvendo.htm

    ncbi.nlm.nih.gov/pmc/articl...

    gyndr.com/endometriosis.php

    and

    sydneygec.com.au/your_healt...

    There are more - but those are the ones i have stuck on my computer as worth reading through.

  • Heya, thanks so much for getting back to me and for all the useful info. It is so much easier hearing it all from someone who has gone through the same thing and understands.

  • I haven't had my appointment yet with the colorectal surgeon, but after reading your post I wonder many things. I had severe endometriosis, located mainly behind my uterus, & spine in 1987. I chose NOT to have my ovaries removed, since I didn't want to go through the 'change' @ 32. I also have RA, I didn't want it to flair up with the loss of hormone as it has NOW that I've entered menopause. I then took 8 months of Danacrine (Male hormone) to kill off all the endometrial tissue, since my decision of keeping my ovaries, the endometrial tissue would have returned. I essentially stopped my ovulating for the length of a pregnancy, hoping it would work. I have spinal stenosis, & degenerative disc disease, For the last 5 yrs. I've been unable to pass any stool without asst. This is so humiliating, I guess when I told the Dr.'s they really didn't understand what I was saying. I've noticed in my research that bio-feedback really isn't working in many women. I wondered IF the Botox was working? At this point, I think I'm all most ready for a colostomy! I can't take it any more... I don't want to have to do this any longer, & it scares me that IF something isn't done, I'll be reliant on a care giver to asst me daily...

    I Pray you're doing better, PLEASE let me know.

    Thanks,

    D

  • Hey thanks, still not a huge change but the docs still think biofeedback will help! What is this about Botox? I Haven't heard about this type of treatment?

  • Treatments for anismus include biofeedback retraining, botox injections, and surgical resection. Anismus sometimes occurs together with other conditions that limit (see contraindication) the choice of treatments. Thus, thorough evaluation is recommended prior to treatment.

    Biofeedback training for treatment of anismus is highly effective and considered the gold standard therapy by many. Others however, reported that biofeedback had a limited therapeutic effect.

    Injections of botulin toxin type-A into the puborectalis muscle are very effective in the short term, and somewhat effective in the long term. Injections may be helpful when used together with biofeedback training.

    Historically, the standard treatment was surgical resection of the puborectalis muscle, which sometimes resulted in fecal incontinence. Recently, partial resection (partial division) has been reported to be effective in some cases.

    I can't find where I found this article, I'll continue to look. Would you care to write me @ my email address? deannatroi3@yahoo.com... I'm having such a hard time with spinal issues...

    Thanks,

    D

  • Hi Faye

    I was really interested to read your post. I have today been diagnosed with severe anismus, adenomyosis and a fibroids and have also been referred to an Endometriosis centre for more investigations.

    I just wondered if you have had improvement in symptoms since last year when you posted and do you feel your anismus is any better now after endo excision.

    Thanks Jonesey43 (Lisa) xx

  • I too deal with this inability to have a natural bm and had DIE endo ...unfortunately this has been ongoing for so long it's deeply locked into my nervous system...I have done bio-feedback and pelvic floor physical therapy, have had the endo excised by specialists, pelvic organs all pulled up and in proper place with mesh, half my colon removed and rectopexy for rectal intussusception...had interstim device implanted and it hasn't worked either..just had botox done yesterday and won't know if it works for a couple weeks...time will tell...I do notice my pain is less in my pelvic floor but my rectum and anus seem to still be quite tight and tense...I am getting the stabbing so am hoping the muscles are doing this as they are forced to relax...so fingers crossed botox is my answer since I have been at this for over 25 years...

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