At the end of July 2026, I got a second opinion from an endometriosis specialist, well third if you include my OBGYN who did my first surgery. But second medical professional that specializes in endometriosis. Talking to her was very validating and grounding in so many ways--mostly in my feelings of hopelessness, which is what I needed. I needed a medically professional that isn't going to dance around how fucking awful this disease is and who isn't afraid to literally say:
"It's my least favorite thing to treat because the treatments are terrible...[she explains why, which I will get to below]...so it feels very unsatisfying as a clinician to be like, here are your terrible options."
Check out previous posts about my endometriosis journey so far to get caught up--I won't be repeating myself, if I can help it!
*"ENDOmetriosis Awareness Month: Last 10 Days of March w/Endo Flare" Published 03/31/26
*"Surgery, New Diagnosis, and Nervous for Future" Published 02/21/26
I had prepared myself for this appointment as a good chronically ill patient does...I had written down many questions and had areas of focus including making sure we both understood what was going on with me--where my endometriosis lesions/adhesions are located in my body (that we know of). I think it is important for me to hear how doctors explain my condition to me in their own words.
This is also the first appointment I decided to record via voice memo app so I could remember better and listen back to it--my memory and brain fog were not great before my now third and probably worse concussion yet that I fell into in April 2025. I have started a blog post update about those updates but haven't gotten around to finishing.
****I will be getting into the nitty gritty details of what my anatomy is going through because knowing it helps me understand where my pain is coming from and that is why we are all here, right?*********
What are my 8-month post-surgery (at the time of the appt.) endometriosis symptoms?
**these are also the symptoms I currently deal with, and they have been worsening over the past few years, I just know now why...
Chronic daily pain--pain areas including everything that encompasses pelvis area, bladder, entire GI tract, hips, stomach, lower back, both flank sides especially under the rib cage under the side, sciatica pain from hips to leg, pain using the bathroom, etc.
--pain types vary including sharp, dull, sudden, gradually, muscle spasms, aching, throbbing...
My worse daily pain is tailbone area into low back--I will get to why...below
Worsening pain during periods and ovulation parts of my cycle
Nausea, loss of appetite, vomiting
Pelvic inflammation, intense bloating
IBS--chronic diarrhea, constipation
Ovarian cysts that stick around and grow bigger than they are supposed to before they absorb
-I am at risk for developing endometriomas which are a specific type of cyst with endometriosis and can be extremely painful and dangerous
Endo flare ups trigger my POTs, which is for a separate blog post.
--like high pain and inflammation can cause me to lose consciousness
***Disclaimer: I did NOT illustrate this, I don't remember who did other than the fact that an endo patient drew this to bring to her doctors appointment to visibly show the doctor the pain she feels...and yeah, same. That is how it feels...with also burning and stabbing in GI tract as well***
Where is my Endo?
My doctor said while looking at my photos from my Nov. 2025 surgery, "Yeah, you sure do have some endo, don't you?"
Most of my active endometriosis is on the back of my uterus--hence why my tailbone, lower back are the most painful areas for me--chronically/daily.
I also have active endometriosis on my colon and left ovary. As well as adhesions/scarring at my left ovary, colon, and a few other places. With endometriosis it is literally impossible to know where it all is because it can be ANYWHERE...lungs, brain, eyes, nose, skin, organs, etc.
What are my options?
NO good options...Endometriosis is NOT curable. It can be treated; the pain can be treated...but even the treatment options aren't great.
Medical treatment options:
Birth control-not recommended because of my fluctuating blood pressure and how consistently high it has been these past few years...when it's not dropping to the floor like me...hahaha....I hahahahate my life.....also has side effects and feeds the endometriosis the estrogen it needs to grow, which guess what, endometriosis can make its own estrogen...fucking wild.
Orilissa(pill, lower dose)/Lupron(shot, higher dose)-the same drug just different variants/dosages
Orilissa-I took for 6 months post-surgery with no change other than periods being somewhat delayed at times, and who knows if there were really any other side effects with all my fucking symptoms...
Side effects: many side effects but long term--bone density loss...it can only be taken for 1-2 years...literally a temporary drug, for what?! More future health issues?!
I kind of wish I didn't take it at all--I stopped taking it in June and have more side effects from being off it than on it...my first period after I stopped was horrendous, and I had two periods in one month. I have continued to get my period every three weeks instead of 4...I am hoping this is temporary while my body finds it hormonal balance again if that is even fucking possible.
Surgical treatment options:
Hysterectomy-3 types, I would probably get a full one
I asked her if a hysterectomy would be helpful for my pain. She said:
"it's tricky because when I look at these pictures, it's hard to know. Even if we went in there and took out your uterus and took out your ovaries, would you feel 100% better? Right? I don't know...So I would be hesitant to think that we're going to fix everything as far as pain goes because you have endometriosis. You have scarring already from it, and we know surgery causes more scarring."
***me internally screaming
Dr. goes on..."Certainly, I can make it, so you never have your period again. I can make it, so your ovaries don't keep stimulating whatever endometriosis you have. [she did fail to mention that endo can feed off itself, but whatever] But, to what end and to what side effect? Because, you know, the gold standard is taking out your uterus and your ovaries for getting rid of endometriosis symptoms. [again, not ever entirely but maybe, ease it up?] Then you're in menopause, and the symptoms that go along with that, the postmenopausal symptoms at age 30 are real."
She was apt to remind me that, "We could definitely take out your uterus and ovaries, knowing that postmenopausal symptoms gonna be on you like the plague, right after that."
Also, removing ovaries before age 35 increases chance of cardiovascular risk, with my family history and my own health history--I have decided to hold off on this as long as I can.
I asked her hypothetically what my outcomes would be if I didn't do anything at all for the next five years...
She replied, "I mean, it depends on if we're talking short or long term outcomes. That means 5 more years of putting up with symptoms of whatever's happening with your endo. It also means 5 more years of potential scarring that could make your surgery harder between now and then. But from a cardiovascular standpoint, you run fewer risks having your ovaries functioning for that time because then cardiovascularly and bone health don't suffer from lack of estrogen..." she goes on a bit more about HRT after a hysterectomy which I also don't want to think about right now...
I reply with "Okay. It's tough..."
She replied with, "It is. Endometriosis gets no love from the research world..." and goes on to talking about how it is her least favorite thing to treat as I mentioned above.
Because the side effects of the treatments are as bad as the symptoms themselves in different ways, it all impacts my POTs, and a hysterectomy/euphrectomy as my Dr says, "is a big deal."
She also validated that having surgery with POTs as a baseline is very hard on me--clearly. We talked about choosing the right time for this surgery. I thanked her for being so validating and giving me space to process...which I still am...sobbing on and off as I have been working on this blog post.
Because then she goes on to say,
"The treatments are no fun. The outcomes with the treatments aren't usually optimal."
Then she offered another surgical option that isn't even done in the cities because the long-term outcomes haven't been proven. It is called peritoneal stripping at Mayo Clinic...I have done minimal research because I am already so traumatized and anxious from this entire experience...that I have been having anxiety attacks when I research so then I have to stop.
Other than what Mayo offers, there is another surgery risk, I can't stop thinking about--damaging surrounding organs. She specially mentioned how ablating the endo on my colon could put a hole in my colon and I could end up with a colostomy bag, among other organ complications...then I shared with her how the ablation of the back of my uterus still feels like it is healing. Which, I didn't share my feelings around since it is part of the reason I want my uterus taken out too--maybe that specific pain would go away.
Then that brought our conversation to how I made the connection of my chronic diarrhea to endometriosis being on my colon, bleeding on my rectum 3-5 days a month, and endometriosis possibly being inside my GI tract. Hopefully, a colonoscopy will be helpful with figuring out what is going on with my GI tract in general. Do not want to go through that nor put my body through that, and I think it could be helpful to better understand and rule out somethings.
My tolerance for sitting and standing have lessened greatly, which makes things an even more difficult game to play between trying to be in less pain or exuberating my POTs symptoms. I have to find a balance between movement when sitting on a comfortable chair for a moderate amount of time or standing for a very short period of time. Sometimes I can't stand or walk, one of the reasons for the wheelchair. This is all due to the heightened daily pain in my lower back and pelvis area specifically tailbone, and typically my right hip. So, I am not only constantly playing that game but extra anxious in social situations where I hope to myself that the chair will be comfortable enough or that I won't have a MN goodbye where I am fucking standing for longer than a couple minutes. The pain just increases as I stand there even with my cane. All of this also makes me anxious to even have a colonoscopy, can my body even handle that?!
This specialist is also the first doctor to basically have my mind go in this loop of thinking about how I am bleeding externally and internally every month but especially on my rectum...like our bodies are fucking wild. Endometriosis can have us bleeding on any organ in our body...ANY, outside or inside...
Part of me just wonders if I will have to wait for an emergency before my next surgery and then also have fears of pain getting worse, which it could very well get MUCH worse.
Just when I think my personal health nightmare couldn't get worse...first (physical health wise) POTS and barley being able to navigate that, and now all of this...again, perpetually internally screaming...
Listening to the song called "White Flag" By Bishop Briggs as my new daily anthem along with some others from my previous post "Songs that keep me going..." has really helped me through the daily battles against intense feelings of hopelessness, helplessness, and suicidality.
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