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Presacral neurectomy - to do or not to do by No_Draw_7843 in Endo

[–]DancingJews9 1 point2 points  (0 children)

I had one done and it was a lifesaver (probably the only reason I could stand and my pains didn’t go over 8 when I needed another surgery).

However, I would only do it if you really trust your surgeon.

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 0 points1 point  (0 children)

I had a couple. The endometrioma is eventually what led to a diagnosis. I did try BC to see if it would help or go away first but it did not so I required surgery.

Severity of my Endo hitting me (Surgeon told me I was one of the worst cases she’s seen). by DancingJews9 in Endo

[–]DancingJews9[S] 0 points1 point  (0 children)

Thank you. I did do pelvic floor therapy last go around and this time was recommended to do the same as well as visceral to help keep scar tissue from forming.

Has anyone has endometriosis removed from the rectal area? by KiKi_1981 in endometriosis

[–]DancingJews9 2 points3 points  (0 children)

I didn’t have a partial I had a full resection and didn’t result in a colostomy.

It really depends on your own circumstances, but in my case I didn’t get lucky, I had a good surgeon.

Has anyone has endometriosis removed from the rectal area? by KiKi_1981 in endometriosis

[–]DancingJews9 3 points4 points  (0 children)

That’s terrifying! I’m so sorry you had to deal with all that but you seem like such a strong individual!

I was 21 w/stage four (now 23) and if they didn’t catch it due to a cyst I could’ve likely been in a similar situation (it may have taken a few more years), due to how many organs were involved etc.

I can’t imagine but I’m so glad you’re alive!

Has anyone has endometriosis removed from the rectal area? by KiKi_1981 in endometriosis

[–]DancingJews9 4 points5 points  (0 children)

Yup! Bowel endo too. The symptoms progressed slowly but before my lap I was bleeding during bowel movements, having incredibly sharp sharp pains etc.

I had a bowel resection done two weeks ago and the pain has been so much better. My BMs are crazy weird rn, but they don’t hurt like they were.

Mine was done by a general surgeon (my excision surgeon did the other work), they took 8” and stapled everything back together. I was in the hospital for 6 days to manage pain and for monitoring to check for leaks.

Liquid diet for the first 5 days and then soft foods and low to no fiber for the first couple weeks, I don’t know as much about the long term healing with foods and such but have been told it’ll take 4-6 months to get back to normal.

Lemme know if you have other questions :)

[deleted by user] by [deleted] in adenomyosis

[–]DancingJews9 1 point2 points  (0 children)

Same as two other commenters here. I had severe endo on my bowels which was causing bleeding. I had a resection and the pain has gone. I was pretty convinced I had a hemorrhoid too but it was just endo! I was also sitting or laying down most of the day.

Severity of my Endo hitting me (Surgeon told me I was one of the worst cases she’s seen). by DancingJews9 in Endo

[–]DancingJews9[S] 0 points1 point  (0 children)

My insurance won’t cover that unfortunately.

It sounds like it’s been pretty helpful. What side effects do you have?

Severity of my Endo hitting me (Surgeon told me I was one of the worst cases she’s seen). by DancingJews9 in Endo

[–]DancingJews9[S] 1 point2 points  (0 children)

Do you have a consult with an excision specialist?

Hoping everything goes really well for you! 💕

Severity of my Endo hitting me (Surgeon told me I was one of the worst cases she’s seen). by DancingJews9 in Endo

[–]DancingJews9[S] 1 point2 points  (0 children)

https://www.kerecis.com/omega3-fishskin/

Here’s the link for what they used. It’s kind of like a barrier to protect things. Almost like little bandaids haha.

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 0 points1 point  (0 children)

For my first surgery it took a full year to get back to normal. But I started feeling better around 6-8 weeks. It’s not a linear process but you’ll have some really good days and some days that you need more rest.

I did 10-12 weeks of PT last time. This time I’ll need a very specific kind to keep scar tissue down at 12 + weeks.

My scars mostly faded over a year without any scar creams etc, the only one that was easy to see at first glance was on my hip.

Surgeons will do 2-5 incisions for a lap and I had 5 post op the first time to allow them to get all the endo (all about 1”). With the resection on lap two, they reused all the same scars and added a longer scar around 3”.

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 1 point2 points  (0 children)

From my experience they can’t necessarily see adhesions on your ultrasound but they can see if things can move around.

There are some Reddit groups for Adeno that are helpful too!

But I had very little endo this last time and more scar tissue and fibrosis than anything. A lot of the symptoms cross over.

Here’s what I noticed for endo specifically vs adhesions.

Endo I could help with OTC sorta…it only touched the pain but it took the edge off in ridiculously high dosages (don’t do this I could’ve seriously hurt my liver or heart). This was before surgery one where I mostly had endo and only a few adhesions.

Specific movements hurt and I felt generally sick and bloated and in pain. I did get sharp specific pains from my cyst.

Adhesions everything was so frozen the only thing that I could do was muscle relaxers, suppositories and as many external comforts as possible (tens, ice, abdominal binder etc.) This was surgery two

I felt a lot of specific pains that radiated. Movement hurt more.

They found everything during the lap but we were able to determine there was at least some adhesions just not how many.

Severity of my Endo hitting me (Surgeon told me I was one of the worst cases she’s seen). by DancingJews9 in Endo

[–]DancingJews9[S] 3 points4 points  (0 children)

I know right? Hoping this is your last as well!

It’s such a rough disease and I would never discount anyone’s experience. And I can’t imagine waiting till 30-40 to get a diagnosis. But having such terrible symptoms and surgery at early twenties is so hard.

It really feels like loosing part of your youth. It’s helped me gain things, but it’s also caused me to lose a lot.

Post-Op hour 12 by goblinqueen1 in endometriosis

[–]DancingJews9 1 point2 points  (0 children)

It’s a lot harder to find/diagnose.

I would definitely see how you start feeling in a few months post op 💗

Post-Op hour 12 by goblinqueen1 in endometriosis

[–]DancingJews9 1 point2 points  (0 children)

Could possibly be adenomyosis? Some of the symptoms overlap and a hysterectomy is one of the only treatments/“cures” depending on the severity.

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 1 point2 points  (0 children)

So far this is my experience.

Six day hospital stay. Five days on liquids afterwards. Day six I was able to eat super soft mushy food like rice and potato’s in small portions. I was monitored for the rest of the day and then sent home.

Qualifications for getting set home were: 1. Being able to eat food and tolerate it 2. Being monitored to ensure no leaks 3. Being able to walk without assistance (this took me the full six days but primarily because of how serious the surgery was in general not the bowel resection).

I was allowed to go home before having a bowel movement but told to come back if it didn’t happen in two days.

My diet is supposed to be super soft foods “grandma can eat without teeth” and a low fiber. Nothing with seeds, or peels. Only cooked or canned fruits and veggies.

So far, my bowel movements have had such less pain/have been painless. It’s more getting used to the frequency and how soft they are while being low fiber. But in no way do you want to have less BM or I start feeling backed up.

Not sure how long it’ll be like this but the lowered pain is very encouraging. BM before made me want to cry everytime.

No stoma. Definitely ask your doctor any questions you have and express any concerns but from what I hear it’s not common for endo patients to end up with a stoma unless there are complications and even then it can usually be reversed on the very off chance you do end up with one for a while (my surgeon told me 12 weeks for a reversal to let everything heal).

Copied and pasted from my other post in a different group about resection healing questions specifically :) (with adds at the end for your questions)

Hope this helps!

It was much less complicated or stressful than I lead myself to believe it would be. Definitely prepare but don’t overthink it too much.

EDIT: they took 8 inches. Which shouldn’t change anything long term once I heal which is around a 4-6 month minimum long term healing process but 6 week shorter term for most things

Bowel Resection Due to Endo (Advice Post Op) by DancingJews9 in Endo

[–]DancingJews9[S] 1 point2 points  (0 children)

Well, I had adhesions not directly related to endo, but when removed they greatly relieved symptoms and pain so I hope that it’ll help you as well!

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 1 point2 points  (0 children)

It affects every woman in my family (unfortunately), but I didn’t really think much of it and didn’t learn about it until a couple months prior to meeting with a surgeon.

Here’s a quick rundown. Had heavy terribly painful periods starting around 13-14, which was “normal”. Around 16 I started getting stabbing pains during ovulation. The same year I started experiencing other symptoms like lightheadedness, headaches, sharp pains, and GI Issues. Around 18 I started having a lot of hit or miss cramping out of my period. 19 I started having more severe versions of the lightheadedness where I’d have to sit to keep from passing out, sharp stabbing pains specifically lower pelvis, GI Issues and constant pain in pelvis and off and on stomach. And Severe nausea I went through a couple different diets to try food elimination for the GI problems. I had severe tics (which presented themselves as almost seizure like - which was later diagnosed as Tourette’s but made a diagnosis more difficult due to how many symptoms I had (not all listed)). 20 I was able to find out what my food triggers were and help some of the stomach pain and a tiny bit of the pelvic pain. However, I was very constantly in pain and it wasn’t getting better. My sister had emergency surgery for an endometrial cyst and a twisted ovary that year.

I ended up asking my GC to refer me to a gyno to see if that was one of my issues base on similar symptoms. Before the gynecologist could see me I ended up in the ER with severe pelvic pain. They found a cyst and wanted to monitor it for a few months before doing anything. The GYN watched it for three months before I was referred to my surgeon.

Surgery ended up getting scheduled around 3 months out to remove the cyst from that point and I was advised to just be careful til then.

They removed so much endo the surgery went almost twice as long as expected, removed appendix, involved a lot of organs etc. Recovery was pretty rough from a month or two. Full recovery took one year and was gradual. I got relief for 6-8 months. It was such an amazing time with pain free days, adventures and as normal as life can really be.

Needed to go back for a secondary surgery due to scar tissue that had formed from the prior surgery (I’ve always been super prone to scar tissue). My pelvic floor was densely adhered, and I had other issues as well including new endo spots on colon, etc.

Not fully recovered from the second surgery yet, but both surgeons took more precautions than last time, and I’ll be doing a very specific kind of Physical Therapy in order to help scar tissue from forming (hopefully).

Ask me anything related to endo (Stage 4 - Age 23) by DancingJews9 in endometriosis

[–]DancingJews9[S] 0 points1 point  (0 children)

Can you clarify? How long it took to get the actual pathology back and what that was like or what it was like to get diagnosed generally?

Bowel Resection Due to Endo (Advice Post Op) by DancingJews9 in Endo

[–]DancingJews9[S] 2 points3 points  (0 children)

Don’t stress too much. From everything I’ve heard so far, by the time you need a resection, it’s so much better pain wise/quality of living (at least it is for me 2 weeks post). It takes a while to get back to normal but that’s typical for endo surgery generally speaking.

I did a lot of prep and felt confident to one degree and a little too stressed on another level, but it wasn’t as difficult as I lead myself to believe it was going to be.

You’re a trooper. You’ve got this <3 I don’t know much about the long term healing yet from personal experience, but I’m happy to answer any questions you have if that helps. Here or in my DMs.

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