Advice needed for Endometriosis/Pelvic Floor Muscle Dysfunction

[PelvicStrong]

Hi all,
I’m new here. I want to share my dreadful conditions with you to see if anyone has similar experience or could offer some advice.

I was diagnosed with Endometriosis and Pelvic Floor Muscle Spasm in 2014 and had a laparoscopy in the same year. My doctor is a pelvic pain specialist in NYC. He performed the endometriosis resection, presacral neurectomy and appendectomy. At the time, I was very unfamiliar with my condition, didn’t do a lot of research and just went with the surgery. I also suffer from chronic vulva pain, painful intercourse upon entering and deep penetration as well as chronic incomplete bowel movement. It all started when I was about 15 after I moved to the states from China. I was constantly constipated (I assume due to diet and stress), so I retrained myself to use the bathroom every morning, where I started to have the feeling of incomplete bowel. The incompleteness is around my sigmoid colon and I recently started digital evacuation. Without completely emptying my bowel, I would have extreme gassiness, bloating and abdominal ache as well as distended abdomen. My GI doctor said that he doesn’t like to use the term IBS for my symptoms as he only uses that when the patient doesn’t have anything else wrong. Also, I understand that the bowel cannot be completely emptied. For my situation, it’s more of the discomfort, not so much of the idea of completely emptying.

After the surgery, I had Mirena installed as the treatment for Endometriosis recurrence. I went to Physical Therapy for 8 months for pelvic floor muscles to help with incomplete bowel movement and vulva pain as my doctor at the time believed that the vulva pain came from the pelvic muscle spasms. It helped me a little bit but not completely. After a recheck, my doctor suggested Botox. I had it done in Dec. 2015. I also had 2 colonoscopies done. 1 in 2008 and 1 recently in January, 2016, both came out normal. I had a blood test for hyperthyroidism and gluten intolerance, both came out normal. I’m going to a breath test for Lactose intolerance this coming up Monday and planning to see a nutritionist as I noticed changes in bowel if I eat differently the day before. With another recheck, my doctor said that my muscle spasm is resolved so the vulva pain comes from the nerve. He prescribed a defecography. I had it done last month and after reviewing the result, he said that the Botox may have caused weaker pelvic floor muscles as I have both weak and tight pelvic floor muscles. I also have minor rectocele (anterior bulging of the rectum measuring 2.8 cm) and moderate posterior compartment descent (4.7 cm below PCL) during strain but we both agree that it’s not the main contributing factor to my incomplete bowel, weak pelvic floor muscles is. In between the rechecks, I visited different gynecologists, GI doctor and physical therapist, they confirmed that the muscle spasm is less but the vulva pain was never resolved after I tried different medications such as Hydroxyzine HCL 50 MG for 6 weeks, Testosterone 0.1% and Estradiol 0.02%, Amitriptyline 25 mg for 6 weeks. I’m currently on both Ketoprofen C-keto/Lido/Gabapentin 10/5/6% cream and Gabapentin 300mg capsule for about 2 weeks and so far, no change. As for incomplete bowel, I tried Phillips Caplets and Linzess. Both gave me severe diarrhea, fatigue and dehydration (still with the feeling of incompleteness sometimes) so I stopped after trying them for about a month.

My pelvic pain doctor suggested vestibulectomy for vulva pain but wants to wait till June to examine me using ultrasound and make a decision on the surgery as the defecography showed that I have a 3cm cyst on my right ovary. As for the incomplete bowel, I declined the rectocele repair surgery recommended by my doctor for now and am managing with digital evacuation and hopefully a diet plan after I see a nutritionist. But it’s not fun, still takes a long time in the morning and severely lowers my quality of life.

Here are the questions that I’ve been dying to know the answers for and want to seek any advice anyone may have.

1. When my doctor performed Presacral Neurectomy, he said that it would temporarily cause constipation up to 6 months. After the surgery, my constipation did get worse as I can’t feel much motility or reflex during a bowel movement on my lower left quadrant – precisely where the sigmoid colon is. It has never gotten better. I tried to research on it but came back with limited information. Some said that the constipation is chronic and some said that it will resolve within 3 months. Given that I have both weak and tight pelvic floor muscles to start with, do you think the presacral neurectomy has something to do with my incomplete bowel movement although I know that its purpose is to stop chronic midline pain. Or do you think my weak pelvic muscles is the reason? My doctor thinks it’s the weak muscles, not having anything to do with the nerve he removed but don’t nerves direct functionality of muscles and tissues?
2. Does anyone have a vestibulectomy and is it effective?
3. Do you think it’s worth to do a rectocele repair? My doctor suggested it but he also said that it’s not clear whether or not I will benefit from the repair. I do sometimes feel that it’s hard to push wind or stool out of the rectum area.
4. Do you have any suggestions on a good PT and a nutritionist in NYC area?
5. What else can I try or do to treat/cure my complicated conditions?
6. Can anyone just be honest with me if my conditions will ever get better or completely away?

I really appreciate your time reading my long post and any advice you may have. Thank you!

[ticked]

Hello,

I hope that I can help you out with some of your questions.

I am not a doctor but a patient/advocate and have suffered from Endo since I was 13 and I am now 38.

I had a PSN done as well and I was always constipated before it and I as well did feel it constipated me more after. That surgery was in 2007. This is a surgery usually done when someone has severe endo along with the Mirena. I refused the mirena.

I was diagnosed with IBS at 15 yrs old and wasn't diagnosed with Endo until 27. I did have rectovaginal and sigmoid colon disease. I am not sure if your surgeon checked there as it is something that is often left behind because the surgeon is not skilled and afraid to operate.

Do you have the surgical report? Do you know if they checked there and if there was endo on the bowel or rectum?

I can honestly say the best treatment you will get for PT is from Clear passage. They specialize in Scar tissue, Endo, pelvic floor, infertility etc. Many people I know have gone there. It is pricey and you do have to go every day for like a week for many hours a day. The reason for this is that if you go to PT once a week or a couple times a month your body does not remember and it is like you wasted your time. It is intense PT and they do internal as well as external. Dr. Wurn I have met and his wife in 2009 (Toronto) We currently don't have a clear passage here in Canada but there are many in the US and other countries.

There is no cure for Endo but having Excision surgery is the gold standard and you should be able to get some relief if done by an endo specialist.

Diet helps. Endo diet is the main one but many endo sufferers have found success eating vegan, paleo, Gluten free/Dairy free etc. I found it did nothing for me. Paleo did help with my bowel movement pain however.

I would not doing anything at this point when it comes to surgery in other areas of your body unless you have ruled out bowel or rectovaginal endo.

I have a lot of journals in my profile as well as my blog address. I have been through a lot of what you are talking about and if you are interested please check it out. If you have any questions feel free to message privately or on here, either way I will respond :)

I hope some of that helps.  

[cmropen]

The Academy of Nutrition and Dietetics has a tool to find a registered dietian on their website that may be worth checking out. Many people find sites like Healthgrades are useful to finding provider ratings, too.