Adhesions with not active Endometriosis

[fbturner80]

Hi everyone. I am sorry to pester you all but i wondered of anyone has had the following and any advice. Just had my MRI results back and my specialist/consultant said that the injections have shrunk my endo he can see the scaring of where it was and that i have Chronic Adhesions. He said this is something they cant do anything about. The pain is unbearable. Bowel, Uterus Womb and bladder all stuck together. Is this true is there nothing they can do?

I have had three C-Sections, one being emergency and a burst appendicitis. I have had 6 Laparoscopies. Every operation they have said they have had to cut through alot of scar tissue(adhesions).

I would appreciate any information/advice in regards to this. 20 years suffering it doesnt seem to be getting any better.

Injections are awful aswell the jount pain is horrendous i am 40 and thinking of putting in a stair lift its that bad.

[Lindle]

Was this done in a specialist endo centre?

[fbturner80 in reply to Lindle]

Yes

[Lindle in reply to fbturner80]

This sort of scarring is endo fibrosis and we are seeing a few surgeons in centres not acknowledging it as all related to endo. There has been a call for a redefinition of endo to include its fibrotic nature. There could be a view that in a case like yours where there have been so many previous surgeries a stage may be reached that they may feel further surgery may not help, but not because it's not endo as it is all part of the disease process. The link to the paper is below. Maybe a second opinion?

academic.oup.com/humrep/art...

[Noodle1984]

I’m so so sorry you’re in so much pain. I can sympathize. I have stage 4 recto vaginal Endo (and 16 other chronic conditions). I had my first Endo lap in February and my rectum was pulled up and over the top of my vagina on the inside, kind of crazy!

Sadly you can only have so many surgeries before you just end up with too much scar tissue for them to go back in they’d make it worse. I have not heard of this fibrous Endo so I cannot comment there. But I do have a few suggestions that I give everyone, maybe there’s something on here you haven't tried.

Things you can do for yourself now..

1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

[fbturner80 in reply to Noodle1984]

Thank you for that advice. I am waiting on appt for Endometriosis Pelvic Pain Clinic and Bone Density Scan coz they want me to continue the injections (even though the side effects on my knees is horrendous) also going to see a nutritionist at my expense to help my situation. I am also waiting on Menopause Clinic appt to adjust my HRT to try and help qith the side effects of the injections.

I am in agony and most days i am exhusted just getting out of bed. My depression has hit an all time high and weight increase 3 stone since Injections started and COVID.

I have asthma so i cant take NSAID medication 😫... honestly whits end....

[Noodle1984 in reply to fbturner80]

Have they prescribed a progesterone (progestin) medication to take in conjunction with the injection? I take lupron (depot injection) and my specialist prescribed progestin (nortulate) to combat some of the side effects of the shot.

Sadly I know all too well what out of pocket expenses are. I pay $3500 a month for my medical expenses. Very little is covered here in Canada. You get your basic medical which includes doctors and specialists (with 9 months - 2 years wait lists) and nothing else. So all my supplements, special food (gluten, soy, dairy, and lectin free), prescription medication, medical cannabis, and my private specialists. Sadly in our medical system they don’t know how to treat chronic conditions. My doctors told me there wasn’t anything else they could do. My new specialist has reduced my overall pain by 40%. So if you have to go private and scrimp and save then do it. Honestly it’s not be easy or cheap but it was the best decision and money we’ve spent.

I will recommend a hormone test for you as you’re obviously still in a lot of agony. I did it last month and it was hugely eye opening. Most regular blood tests don’t give you a large picture of what your hormones do in a 24 hour time frame. It’s called the DUTCH test and it tests your sex hormones and adrenal hormones. It will help your doctors better help you to know what you’re missing in your system. For me all of my hormones are bottomed out. When your body isn’t producing the right amount of adrenal hormones you can become chronically fatigued as well. I have severe adrenal fatigue and anemia so it’s like a life of a zombie 😆. Last night I got 0% rem sleep. 😫😴 So basically you pee on this special strip 5 times in 24 hours and it gives them an idea when your hormones drop and such. It’s based out of the USA so I don’t know the logistics of getting it there but I would check their website.

Just keeping hanging in there and keep trying different things. I’ve found through my health journey that no one thing is going to work for everyone. 💕