It all kind of began around the end of 2016 when I saw an OB/GYN to see why my menstrual cycles were so severe and painful.. We did some tests and everything seemed pretty normal. He concluded that I probably have endometriosis and gave us a few options. One of the options was to perform laparoscopy surgery to see what he would find and also remove it. We however, did not feel at peace with it, something just didn’t feel right and I’m so grateful. In hindsight I can totally see it was guidance from God. So we picked another option. One of our biggest drawbacks was the chance of the endometriosis coming back n having to perform surgeries multiple times. Altho our Dr. did not put much emphasis on that and acted very confident that the surgery would be a ‘cure’ and it was not a big deal.
I did some researching in the next year and we had better insight on how to handle the pain, but it kept getting worse. I started having some pain in-between cycles, and a lot of the symptoms of endometriosis were definitely present. Fatigue and nausea at random times made my hubby think I had a blood sugar issue. But painful periods were definitely the worst, during which even with 3 Ibuprofen every 4 hours I was not able to perform the normal household duties; without them I felt like I was delirious n literally could not think straight to breathe through the pain. Hot baths, or heating pads helped some to be able to uncurl.. I also had pelvic pain especially in my left side and some bowel issues.
Fast forward to January 2018 I coincidently & divinely came in contact with a lady that had multiple endo surgeries and she answered all my hundreds of questions and explained to me the difference between removing endometriosis with ablation vs excision. Immediately it made sense to me. Through many voxer messages she became a friend to me and shared her experiences, not because she got anything out of it but just because she cared. We were becoming desperate for relief from pain, pain that is NOT normal. I did lots and lots of researching and praying. Is it too good to be true? Is this really the right path for us? We felt an incredible peace and clarity from God to pursue the excision surgery. So basically I want to share some of the insight that I gained through the process if there is anyone out there that has as many questions as I did. (Details of my specific surgery to come in Part II.)
Endometriosis (endo) is a very mystifying disease and I still struggle trying to explain it. So I’ll try to share it in plain terms and you can read more about it here and many more details here. There are many myths and explanations all over the internet but no one truly knows what causes endo or what it is exactly.
The theory that my Dr. perceives to be most accurate, and what makes the most sense to me is this: Endometriosis is when tissue (similar to endometrial-tissue, which is the lining of the uterus) grows outside of the uterus. It can form into endometriomas, fibrosis, adhesions etc, basically anywhere in your body. They think perhaps it is genetic, because they have tested babies born with it. In fact, women that have a close relative with endometriosis are 5 to 7 more likely to also have it. Generally the pain and inflammation is not a nuisance until reproductive age, however some never have any symptoms. The most common symptoms are:
- Crippling period pain in people who menstruate
- Abdominal pelvic pain at any time, often intractable and chronic
- Bowel or urinary disorders/pain/dysfunction
- Painful intercourse/penetration/sexual activity
- Infertility/pregnancy loss/possible link to preterm births
- Immune-related and other comorbid disorders
- chronic fatigue with menstrual abnormalities
- Nausea and/or vomiting
Not all persons with endometriosis will have all symptoms, and no two cases are identical.
Like I mentioned, it can be a bit of anywhere, but most commonly on or around the pelvic structures, bladder, bowels, intestines, ovaries and fallopian tubes. Very rare, but it has been found on the brain. The only way to be diagnosed is through surgery, typically a laparoscopy. Unlike what you may think it cannot be seen on ultrasounds. I did have an ultrasound to check for any endometriomas or “chocolate cysts”. Thankfully I didn’t have any of those.
The thing that saddens me the most is that 1 out of every 10 women in the US have endo, yet many remain undiagnosed. To me it seems like a confusing disease. Most regular Dr’s are not properly trained or educated about it. Many women, myself included, finally resign that it’s all ‘in my head’. But it’s not. Way too many times the pain is not looked at as a serious issue until the subject of infertility comes up. And that is just one of the symptoms. There are many women that deserve to have their case looked at and treated even if they have not been seeking infertility treatments.
There are 4 stages of endometriosis: minimal, mild, moderate, severe. However, stage was primarily developed to assess fertility and has no bearing on pain or symptoms. A person in stage 1 can suffer in the extreme while a person with stage 4 does not experience any pain (though higher stages often present with painful, fibrotic and deep disease).
Ok, so a little bit about ablation vs excision.. I debated about copying paragraph 10 from this page, but decided to keep writing in my own words to make it as plain and simple as I understand it. Basically the ablation surgery is the normal everyday surgery most of your OB/GYNs will perform. They will just go in and skim or burn off the tops of the endo, what they can see. Leaving behind the bulk of your endo and allows the subsequent adhesions to bury the remaining disease. Definitely causing you pain again in the future. Most likely the Dr will give you medication or advise diets to control the inflammation and chances of it causing pain again. Laparoscopic Excision (LAPEX) is the surgical cornerstone of any high quality approach to correctly treating the disease. LAPEX allows for endometriosis to be meticulously removed – cut out – from all areas, without damaging surrounding structures or removing otherwise healthy organs. I also firmly believe that it is not just important to find a Dr. performing excision, but find one with lots of experience, who really knows what he’s doing-his speciality. Also make sure you trust the skill of your surgeon! (more details on how & why we chose our surgeon in Part II.) So basically imagine an adhesion of endo as a huge iceberg with only 1/4 of it poking up out of the water, ablation will burn off the top 1/4 and leave the rest. Excision will remove the entire iceberg layer by layer until there is none left. With ablation you have a 40-60% chance of the endo symptoms returning in 1 year, and 80% chance that it will be back in 5 years. With excision you only have a 5-7% rate of return in 5 years.
Whew that felt like a lot of information. If you have any clarifications or comments, feel free to comment! Also stay tuned for Part II where I will be sharing about my personal experience with LAPEX by Dr. Sinervo!
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