Endometriosis surgery with pelvic floor dysfunction

[Orange8]

Hello all,

I’m writing to see if anyone here who has pelvic floor dysfunction has also had endometriosis surgery? I’ve been getting Botox injections every 6 months to my very tight pelvic floor muscles, which has helped with my chronic pelvic pain. But I’ve also been clinically diagnosed with endometriosis, and I’m considering doing the surgery for that soon.

The doctors who do the endometriosis surgery have told me that even if they go in there and remove any endometriosis tissue, I might still have the same (or worse pain) due to my tight pelvic floor muscles- especially if the surgery causes inflammation, which will increase the chronic pelvic pain. They make it sound like it’s a huge risk to do the surgery, but if I don’t do it, I won’t know for sure if there is, in fact, endometriosis tissue causing or contributing to my pain.

I’d love to hear from anyone who has done the surgery for endometriosis, even if you don’t also have pelvic floor dysfunction. (I also have a rectal prolapse and rectocele. So it’s hard to know how surgery will affect these other things in the same area). Any tips as I decide whether or not to do the surgery?

Thanks in advance! 🙏

[Boba369]

Look up Dr. Brooke Goldner on YouTube. Drink her green smoothies recipes they calm inflammation down. Also Evening primrose oil and B vitamins helps. Avoid foods that cause inflammation including sugar, processed foods, dairy, meat, and anything that makes your body acidic not alkaline. Eat raw organic greens as much as you can and other vegetables or fruits that are organic. Stay away from soda, coffee and caffeine if possible.

[Orange8 in reply to Boba369]

Thanks so much for the tips, Boba369! Much appreciated!

[MyStar86]

There is an endometriosis page I would put your question on there. I have had loads of endo surgery and it’s best to get it removed as endo causes inflammation just by being there so you need to get it removed there are risks with every surgery and every procedure but if it can take away the pain the benefits outweigh the risks. Where has your endo been found?xx

[Orange8 in reply to MyStar86]

Ok- thanks, MyStar86. That’s good to hear. Yes- I would love to just get it out. They haven’t determined where the endo is, because I haven’t had the laparoscopy yet. But the plan is to meet with the doctor in February, and then schedule it from there. I’ve just been clinically diagnosed with it as of now, but will know more once they go in there and look. I have all of the debilitating symptoms of endo, and unfortunately it was just never diagnosed until now. Years of suffering in intense pain, and the pain has gotten much worse in the past couple of years. But I’m sure you know all about this if you’ve had multiple surgeries for endo. So I’m sending you hugs. By the way, one endo surgeon told me that they only recommend doing surgery for endo once because of scar tissue that can form with multiple surgeries. Have you had any issues with this? Seems like sometimes one surgery doesn’t resolve everything, especially if the endo is complicated or at a late stage. So they must expect some people to come back for more surgery and not just be done after one. 🤔

[MyStar86 in reply to Orange8]

That’s just the nhs being lazy yes surgery can cause adhesions but my last surgery showed that I didn’t have any and I had my diagnostic lap then had to have another lap for endo that needed a bowel surgeon and then I had a total hysterectomy everything removed ovaries, tubes and cervix then I had another surgery this year and then for other reasons not endo I had to have surgery to form an ileostomy so no one surgery is not the norm most people would have an mri first to show where there is DIE ie the complex deep infiltrating endo which would require multiple surgeons for example if it’s on the bowel etc as this can save multiple surgeries but if you have a look on the endometriosis page you will see most people have had many surgeries because not everyone is lucky enough to just have the one. Hopefully you are under an endometriosis specialist so that can perform excision surgery not ablation because that’s what tends to happen when it is surface endo and a non endo specialist operating they use an ablation technique to burn it off which isn’t as effective at stopping it coming back. Surgery can help a lot with the pain but there is nothing stopping endo coming back unless all endo has been removed. Have they put you on any treatment? Sending big hugs xx

[Orange8 in reply to MyStar86]

Thanks! And wow- it sounds like you’ve been through a lot with the surgeries. Hope you’re holding up ok. Yes- I’m now seeing an endo specialist after many other doctors didn’t know how to help. My MRI didn’t show any deep infiltrating endo, so the doctor suspects that I probably have small pieces of tissue that can’t be seen on imaging but that could be causing a lot of pain. The treatment she put me on is non-estrogen birth control, which has helped with intense pain, but it’s still there/still really bad some days. I also take painkillers every day for the pain, but I wish that I didn’t have to. On top of surgery, have you had treatments or medications that have helped? xx

[MyStar86 in reply to Orange8]

Unfortunately not I didn’t find that anything helped me I tried all the herbal things and natural treatments but nothing worked plus I had Pmdd pre hysterectomy so I couldn’t handle the progesterone only pill I tried the zoladex ( chemical menopause) but it sent my hormones crazy so I had to stop and hold out of the hysterectomy.

On the endometriosis page you will find lots of advice people do try lots of things obviously heat pads for the cramps hot baths I even heard of castor oil compress on the tummy but that page is very helpful.

Do you know when your surgery is going to be?x

[Orange8 in reply to MyStar86]

Ok- thanks. Yeah…my heating pad is my best friend these days! I also take hot baths and use castor oil. My surgery will hopefully be around the middle of March, but I should be able to schedule it mid-February after meeting with the doctor. Thanks for your support! xx

[MyStar86 in reply to Orange8]

Have you been given any pain relief medication to take because your gp should be able to help you with this as I know a lot of people from the endo page take lots of different medications that can help especially during the worst times so don’t suffer in silence make sure they know and give you something to help especially if you have to wait till March. Let me know how you get on and any questions I’m always here xx

[Orange8 in reply to MyStar86]

Thanks so much. 🙏 Yeah- I’m finally on a long-term pain management plan, so fortunately I can get refills of oxy every month (I had to beg for a long time for this, because many doctors didn’t believe that I needed painkillers, even after I would describe over and over how severe the pain was, and even after I’d end up in the emergency room every time I ran out of them because I wasn’t able to move without intense pain. That was the only way to get more…waiting for hours in an emergency room in agony. So messed up! But I’m sure many people on here have experienced the same thing. I’m in the U.S., and because of the opioid crisis, people who are in real pain are made to suffer because doctors now deny everyone painkillers, and question you about being an addict. Nope…just trying to make it through the day, doc! 🙄) Again, I wish that I didn’t have to take them every day, but I’ve found that it’s the only thing that comes close to touching the pain. Really hoping that surgery helps. 🤞

[MyStar86 in reply to Orange8]

I know I had the same issues with my gp she has been so patronising at times and when we last spoke she told me to buy myself a bunch of flowers to make myself feel better or go shopping or go out for a coffee and treat myself I didn’t need more pain management. It was awful I cried for days she made it sound like I just trying to get paid meds even tho she knows full well I survived for years without them but went suicidal due to the pain so she was being very stupid saying what she did but that’s gps they think they know everything and I hope to avoid them at all costs. I hope the medication helps you through the difficult times. I’m sending big hugs xx

[Normie-Orms]

hi there, haven't you got enough to deal with without causing more pain. Ever6 time I get some sort of treatment for my chronic pelvic pain it gets worse for about a week. I've just discovered how to take the pain down about 5 notches and that's swimming in the sea. Not sure why but maybe to do with no weight to bear when floating? I'm loving it anyway. Walking makes it really throb but I have to stay fit and healthy or else I'll be in real trouble again. I've also made the decision after 4 years of no diagnosis to stop looking for an answer and get on with my life. Just deal with the pain and do whatever I can to lower it. Im swimming in my sons pool here in Perth 3 times a day so that helps too. Being stressed increases my pain so relaxation is the key. So I'm going to do deep meditation twice a day as well. My system is now used to being on high alert so needs calming. Hope this helps! Norma

[Orange8 in reply to Normie-Orms]

Thanks, Norma! I’m happy to hear that you’ve found swimming in the sea to be helpful. I love doing that, too. And I’ve also found meditation to be really helpful for calming the nervous system. Sorry that you haven’t had a diagnosis in 4 years. I know how frustrating that is. What kind of treatment have you done for your pelvic pain? (I’ve done the Botox injections, but yes…the pain gets worse for about two weeks after the procedure before it gets better.)