Endometriosis Update
Welcome back, beautiful people! I am here today to give you all a little update on my endometriosis and the journey I have been on with it to get it under control while also trying to deal with the pain. Things have been getting worse over the past few months and I was finally able to get in to see a new gynecologist who has been absolutely amazing and so helpful! Because she has given me some new tools, I wanted to go over how things are going, my new plan, and keep you all updated on how it continues to go! I have received some messages on my Instagram (@mermaidmadey) lately saying how people are appreciative of me talking about it, so I want to make sure I keep talking about it and giving updates! Invisible illness can be very lonely and if I can help at all, I want to do that.
For everyone who is new here, I have linked a previous blog post that I wrote that goes into what endometriosis is and what I have done before to help, but I wanted to give a brief overview here just for context: once a month when a woman gets her period, the lining of the uterus is shed which is why we bleed. The tissue that is being shed is called endometrial tissue, and in people who have endometriosis (endo), the tissue grows outside of the uterus and onto other organs in the abdominal cavity. The tissue gets inflamed easily, causes a lot of pain, and a whole host of other truly horrible side effects. You can have stage 1-stage 4 endo, stage 1 being the mildest. I am stage 4 endo, and while it doesn’t carry the same life-threatening prognosis as a stage 4 cancer diagnosis, it does carry a lot of pain and the potential for things to get much worse. For me, I have endo spots on my ovaries, up on my cervix, fallopian tubes, some small ones on my bladder, and some pretty intense ones on my bowels. This causes me pretty intense pain and starting around February, I was noticing my pain getting worse. Which is where the story begins today!
Around February, my pain was becoming more constant. I do have chronic pain associated with my endo, but it had been allocated to just a lot of pain right before and during my period. The chronic aspect had mellowed a bit but had started coming back. By March the chronic pain was chronic again and I was waking up with it, going to bed with it, and nothing was helping. I was taking CBD every night to avoid painsomnia (can’t sleep because of pain) and just suffering through the days. Luckily that was peak quarantine so I was home most of that time anyway and was able to rest. Starting in about April, I noticed I was perpetually bloated. When you have endometriosis, there is a phenomenon called “endo belly” that a lot of people get that is basically just extreme, painful bloating. Your stomach gets very hard and distended but it typically only lasts for a couple of days before it slowly goes back to normal. By the beginning of June, I had endo belly 24/7 since April and there was no way to combat it. I was extremely uncomfortable and with the pain on top of it, I was barely making it through the day. Near the end of July, I was finally able to get an appointment with a new gynecologist who has a lot of experience in dealing with and treating chronic pelvic pain. After a decently long appointment, she had given me a new plan to work with and all the reasons why I should have been doing this earlier. Here is my new plan of attack and the reasons behind these steps!
Diet- I will be cutting out dairy and soy on top of already being gluten-free. Gluten, dairy, and soy all feed inflammation and often make it worse in people who already struggle with inflation issues (me) so by cutting these foods out it should help control the worsening inflation of my endo spots as well as help my IBS I have from the endo on my bowels. This diet should also aid in not making the spots on my bowels worse and help prevent further damage to them and all the other organs my spots are on. It will also help lessen some of the pain in theory.
Meds- Up to this point, the only medication I have been using to treat my endo is my IUD, the Kyleena. I have now started taking a newer medication called Orlissa which is a medication specifically designed to suppress new endometriosis growth on current spots but also to suppress new ones from growing in. As I am posting/writing this I have only taken Orlissa for one week and can’t really give a full review of how it’s working or the side effects yet. But! Once I have taken a full month of it I will let you all know how it’s going. The biggest downside of it is that you can only be on this medication for 2 years because it has negative effects on your bones when you take it for longer. Hopefully, in the next 2 years, they come up with another treatment. This one is supposed to be much better than Lupron or Depoprovera which are the only other options for endo treatment. They are shots that are very intense and concentrated amounts of hormones that put your body into menopause. They have really intense side effects that can be really hard on your body, which is one reason the Orlissa is a great option because while it does have some potential some effects, they are a lot more mild and far fewer women reported getting the side effects. So to me, those are much better odds. I will link the info for Orlissa so you can read some more for yourself, while also linking for Lupron and Depoprovera so you can see the insanity of those side effects.
Surgery- Unfortunately, there is no cure for endometriosis, and the things I will be doing above will only go so far if I don’t get an excision surgery. This surgery will remove all of the endo spots that they can so I am basically starting with a clean slate. Combined with the new diet and Orlissa, this should help keep my endo re-growth under control for at least the next two years. Even though it will suppress it, it will not stop the growth altogether. However, it will give me a clean slate (kind of) to start over with. My gynecologist told me that I have such an extensive case of endo that I will most likely not get any relief until we cut it all out, so as odd as it sounds, I am really looking forward to getting this surgery. I will be speaking with a specialist soon, who will be doing my surgery, and then hopefully working with him on methods to keep preventing my endo re-growth as I move forward. Since we are in a pandemic, I am not sure when I will get to do the surgery since it is technically elective, but I will, of course, keep everyone updated as I move forward.
For now, that is it! I have just started all of this and will keep you updated as I start to really get into the new plans and how they work. Also, go on over to Youtube and subscribe to my channel linked here. I will be posting some food videos soon as I start to learn how to eat within my new restrictions! And since it’s me, you can expect some chaos in those videos as well as some tips to eating within these restrictions.
Thanks for getting to the end! I have some more fashion posts for ya this week so stay tuned for that!:)
Madey
Cover image found here