u/olipocket16

I’m now a little over 12 weeks out from my excision and hysterectomy at the beginning of April, and I feel like an entirely new person already. I feel like I got at least a decade of my life back and there’s even more improvement to come as my body recovers from surgery and from years of being deconditioned.

Quick context: I’m 33F, had stage 4 DIE.

Here’s a few of the highlights I’ve experienced since surgery:

1. Significant reduction in pain. I can now do many different types of activities without flaring up and my only real pain has come from the surgical recovery, not an endo-type flare.

2. Reduction in fatigue. Most days my level of tiredness is now proportional to my level of activity. I can now go a whole day without a nap or crash out. Before, as much as washing the dishes was enough to destroy my energy level for an entire day.

3. Seriously improved gastro function!! I had a ton of bowel endo which caused lack of motility. I am down to half the dose of laxatives I take daily and even better… I can eat gluten again!!! No more endo belly, gas pain, bloating, nausea, nada! I have been shovelling gluten into my mouth at an alarming rate since about 6 weeks post op and loving every crumb lol

4. Reduced anxiety. I still have anxiety but it’s nowhere close to what it was like before. I feel like I’m free in my body, not a prisoner awaiting the next unexpected torture session.

5. Improved cardio function. This is a by-product, not direct result of the surgery I am sure since I am now able to do more physically, but my Fitbit notified me of a significant reduction in cardio load and BPM now versus pre surgery for the same activities. Basically, my heart doesn’t have to work nearly as hard to do stuff anymore.

6. Improved blood pressure. Likely goes along with cardio function but because of how bad this alone used to affect me, I’m giving it its own section. I used to regularly pass out with standing up, have to wear compression socks, and drink electrolytes or even sometimes just eat pure salt to remain conscious. Now, that’s seems pretty much miraculously fixed for the most part.

7. Improved overall mental health. Besides what I already mentioned about anxiety, I feel like there’s hope in my life again and that the future means something now. I’m taking chances that come my way and saying yes more and more. Life feels like sunshine is coming through the window instead of trying to keep my head above water.

This surgery was the best thing that has happened to me in so long and I genuinely feel like I have been given a new chance of life. My brain and body have been going steadily downhill for so long, I didn’t realise how bad things had truly gotten until recently. To feel this good even 3 months out is nothing short of an actual miracle.

To anyone reading this who is hesitant about surgery - it can absolutely change your life. It changed mine already more than I could have expected, and there’s still plenty of progress to be made. Find a trustworthy and skilled excision specialist and it could change your world. It did for me.

I have seen so many sad stories on here from people who have gone to doctors claiming to be endo specialists and had terrible experiences. I just finished up care with a real endo specialist and had a truly amazing journey with her. I wanted to share what I found she did right compared to other doctors I have seen (or heard about from friends). The comparison is night and day.

1. Listened to hear me, not just respond to me. When I spoke she looked at me, gave me time to arrange my thoughts into words, and waited to make sure I was done speaking before she replied. She let me describe my emotions, not just my physical symptoms, and considered both in her response.

2. Accepted my choice to not have children without contesting it. I requested a hysterectomy and at 33 I wasn’t sure they’d give it to me, however, she simply explained the risks (of surgery itself and the slight increased chance of dementia). No “are you sure you don’t want kids?” or “you’re too young and you might change your mind” or “what does your partner think” or anything. She simply told me the risks involved as any good doctor should, and accepted my consent.

3. Involved interdisciplinary care. Since the surgery wait list was long (over a year), she wanted to use that time to get me as prepared as possible for a successful surgery. She referred me to a physio clinic who specializes in pelvic floor therapy for endo patients. She also recommended psychotherapy as endo tends to have serious psychological impacts (from being gaslit, from chronic pain, even from fearing your own body). Both of these other practitioners helped significantly.

4. Prepared herself for surgery by ordering imaging. I had an MRI first, and when she saw something that wasn’t fully captured by it, she ordered an endo mapping ultrasound which gave her the information she needed to properly plan my surgery. She explained she wanted my surgery to be complete, meaning no surprises once she got in there so that she could do one full surgery instead of having to pull out and do a follow up surgery to address anything she hadn’t been prepared for.

5. Validated me. My follow up was so validating I cried. I already knew I had Stage 4 from a surgery five years ago, but the way she explained everything and went over my results in detail helped me really understand why I have struggled so much and that I have not been exaggerating or am just dramatic. This is a truly life altering disease and we are taught to downplay our symptoms so much.

6. Carefully considered recurrence. We had a long discussion about the measures she took during surgery to help prevent recurrence as well as my own personal likelihood of recurrence based on factors like medication. She gave me options for continuing or stopping meds, how they would affect my chances of recurrence, and took time to answer all of my questions. She also detailed what recurrence might look like should that happen and gave me a brief rundown of what a future care plan would look like if it did return.

This doctor truly lives and breathes endo care and I have never felt as truly cared for by a medical professional in my life. Helping people with endo is clearly her passion and she truly wants the best outcomes for all of her patients, no matter who they are. A real endo specialist has the training, expertise, and surgical skills to completely excise endo AND considers what their patients need beyond surgery to make their care a success. We are human beings, not just bodies on their table. Make sure your doctor sees you and treats you as a real, individual person. It makes so much difference.

Exactly what the title says. Does HS204/206 just go more in depth into how things work? Like the nitty gritty? HS101 covered a lot so just wondering if there’s a benefit to also taking HS204/206 as electives or if it would be fairly repetitive

Hi! I had my total hyster and endo excision on April 9 (18dpo today), and so far everything is going really well. Still pretty limited on activity and taking things super nice and slow since I am a (mature) uni student and am now off for the entire summer until September.

My partner and I are thinking that since my recovery is going super well, that hopefully I will be able to do a trip in August. We’re thinking a week or so trip to the Maritimes (from Ontario), province undecided but PEI has always been on my bucket list. With flight costs and cancellations, driving is probably most realistic.

Is this trip realistic 4 months post op? Is there a good chance that I’d be able to do enough walking and such by then to make it a fun trip? Is there likely to be any irritation from the seatbelt for long periods of time by then? Any insight appreciated!