YOUR Endometriosis Story🌸

Hi, have you tried drastically changing your diet yet? Low fodmap or gluten free? Cutting refined sugar? A lot of your symptoms sound like they're related to chronic inflammation/leaky gut syndrome. Which really seems to dominantly affect hormones. Have you ever heard of these conditions and looked into how what you eat affects your body? Have you tried any holistic approaches like herbs and supplements?

Long story short, went in for a left ovarian mass suspicious for cancer, woke up was told I didn't have cancer but stage 4 endometriosis, with not only the grapefruit size endometrioma n the left ovary, but a football size endometrioma on the right ovary ( which was not visible on any ultrasound, ct scan or MRI that I had!). The masses, endo tissues and appendix were all removed, took him 9 hours to remove poor guy.

Almost 2 years later, the ovarian masses are back on both ovaries, about 5mm each, and constant moderate to severe pelvic pain, that radiant down my right buttox and leg, down to my right foot.

What is really interesting is I'm suffering badly from the same pain you mentioned, that is sort of flank, more on the right side and goes up to my neck. It gets so severe I choose not to eat because distention of my stomach makes it worse somehow.

I had this back pain symptom for years, it only went away for 6 months after my surgery, but now it's back with vengeance. I am told maybe endo is on my diaphram and that's what's causing the pain?

I currently take BC, cyclofem, and I'm told to purposely skip my periods, which doesn't always work. And I take ibuprofen and tylonol for pain. Even if I hemmorhage and have evidence of it in ultrasound, the primary doctor is reluctant to prescribe me anything stronger because he says I'll have this pain for the rest of my life and he hates prescribing it...so I just suffer in pain, don't have any other choice. What do you guys do for pain?

Oh also for some reason when I relax the sphincter to urinate, it feels like my insides are about to fall out....so I have to urinate sideways....idk if others experience this, the oncologist who did my surgery thought it sounded bizarre lol.

Hi, Me i have from january, a strong pelvic pain, who go in my vagina this pain, i feel my legs inflated.I check Very much doctors, nobody told me about endo, every body Say u are ok, pain will go.Afer 5 month a doctor he told Me u have endometriosis,

Hi Stephanie,

I’m sorry to hear about what you have been going through!

I am 24 and was diagnosed with endometriosis at the age of 22. Basically getting my period was awful since they started at the age of 12. Heavy flow, bad bloating (belly pops out), horrible cramps that would make me nausea and throw up (naprogesic wouldn’t help), the pain would spread to my thighs and I’d feel sharp pains in my cervix area. In between my period I’d have constant brown spotting and light cramping most days. I get a lot of the symptoms you mentioned - IBS like symptoms and lots of headaches, painful urination, tiredness and burping, nausea, flatulence, heartburn, dizziness, sore neck glands. I tried 5 different pill brands before being diagnosed and this never helped. My gyn removed a lot of endo jelly from my bladder area and mirena IUD was inserted during my laparoscopy.  It’s been 2years and the mirena was the best decision I made, despite being terrified of the horror stories. I had terrible cramps at first which is normal for someone who hasn’t been pregnant. The plus is I don’t get periods and I’ve felt so happy and healthy without them. I’d like to follow up with my gyn as I’ve been starting to get my period again very lightly and not sure if that’s normal. 

As for your stomach/digestive symptoms, you could try cutting out dairy and coffee - this helps me. 

Hey,

My story is that I was trying to get pregnant by IUI and after 3 failed attempts I had 2 cysts on my right ovary one which ended up bursting.  The other sat there at 5cm.  I started to have pain so I went to have laparoscopic to remove the cyst but when the surgeon opened me up he wasn’t even able to get to the cyst.  He said the build up was so bad.  That’s when I was diagnosed with stage 4 Endometriosis which has attached to my bowels.  This was last year.  Since then, the specialist placed me on Visanne which ended up making my symptoms worse and affected my hormones so badly I was close to the edge of suicide. No joke.  It affected me that badly.  So I went off that  after being on it for 2 months.  Since then I have been on birth control, Marvelon, and have been taking that 60 days on then 5 days off so I still get a period.  It took me about 2 months for me to start feeling more like myself again but the pain and symptoms have just kept on coming.  I have finally told the specialist that I want surgery but she said for me because of the bowels that I’m too high risk and it’s going to be hard to find a surgeon who will do the surgery.  Even if I were to have a total hysterectomy the attachment to the bowels will still be there so it won’t benefit me.  I don’t want a hysterectomy as I am only 37 and hope that I still will be able to carry child someday.  

It’s really hard for people to understand this sad disease that has taken over my life.  They just don’t get it.  Many don’t even know what it is.  When you explain they just pass it off as “period pain”.  I tell them try what could possibly resemble labour pain daily for the past 8 months!  

Some days are better than others.  I know eating healthy and exercise are supposed to help with the symptoms but when I’m in so much pain the last thing I want to do is eat food or get on a treadmill.  

I’ve been avoiding gluten and try to also avoid dairy.  I have been taking fish oil pills along with a multi and a DIM cap breakfast and dinner and then at night  magnesium.  I have also been on medicinal cannabis which helps me have a bit more of a normal life because the pain killers  made me sick and sluggish, plus they can be addictive and I don’t need another problem in my life!

I have had a referral sent to a surgeon but it’s a 6 month wait just to get an appointment date!  I live in Canada.  I’m very happy for our free health care, but the wait time is ridiculous.  There was a clinic in California that I was looking into but the cost was upwards of $70,000.  So I am now looking overseas, Europe, Australia etc.  

I just want my life back!!!

Have someone tried hirudotherapy (leeches)? I have one tube only, it was bad affected with endometriosis related inflamation. Tried leeches and it did help, I got pregnant.

Now all is back and even worth, as my uterus has anteflexion and i have pain during intercourse. Doctor said because of endo I have pain as my uterus is inflamated. She offered me hysteroctomy, but I want to try more natural methods. Started homeopathical treatment, will see how it goes.

Good luck and health to all suffering.