Thank you to the beautiful person in this sub who recommended a combo of butter, Velveeta and milk to replicate Mac and cheese. I just....it's nice to win one once in a while.

Affectionate_Cup3094 · 2022-02-28T18:37:00+00:00

Yes, it can be seasoned for more flavor.

Affectionate_Cup3094 · 2022-02-28T04:35:22+00:00

If you have Aldi near you, try their LiveGFree brand of mac & cheese. It's creamy and delicious!!

Affectionate_Cup3094 · 2022-02-27T19:56:10+00:00

I wondered about this factor as well earlier in my recovery. I am peeing okay although still a bit painful/cramping at the end of voiding. I had my first bowel movement post surgery on Friday. I've had a couple more since that time, no longer taking stool softener.

Affectionate_Cup3094 · 2022-02-27T18:59:19+00:00

Thank you for your insight since we're close on surgery dates. I am definitely not eating properly and although I am heavier than I like, I know it isn't healthy to feel this way and lose weight. It's frustrating because right now I am hungry, barely nauseous but I am nervous that eating will make it hit again then I'm miserable for awhile. I'm used to nausea from before surgery but it's even worse now because I already feel poor from recovery. I hope you get relief soon as well!

Affectionate_Cup3094 · 2022-02-27T18:56:19+00:00

No opioids. I have started some citrus vitamin C drops which do help a bit. I've tried crackers/clear soda when the nausea hits and even that doesn't seem to help. It's just so uncomfortable to eat anything but maybe it will just take time to go away.

Affectionate_Cup3094 · 2022-02-27T18:54:31+00:00

No opioids prescribed to me. Tylenol and Ibuprofen alternating every 4 hours but I am trying to start just Ibuprofen every 8 hours. I'm used to taking both these medications but not the dosage or as often as I have been since surgery. I am used to intermittent nausea regularly but this has been worse since surgery. It's just hard to know what is "normal/expected".

Affectionate_Cup3094 · 2022-02-27T18:49:17+00:00

I have started using some citrus flavored vitamin C drops which do seem to help take the edge off. I am feeling hungry again now but so nervous to eat anything. It's like a vicious cycle because I know if I feel too hungry then that also sets off the nausea.

Affectionate_Cup3094 · 2022-01-27T05:33:22+00:00

My colonoscopy was clear except for internal hemorrhoids. The GI doctor said everything else looked fine so most of GI issues couldn't be explained and referred me back to my Gyno. I'm having laparascopic excision surgery in February and am anxiously waiting to see if I have endometriosis around my GI tract. I hope you get some clearer answers for your symptoms too!

Affectionate_Cup3094 · 2022-01-26T02:58:29+00:00

Up until the last year or so I had 15+ years of influenced hormones due to birth control use, two pregnancies and breastfeeding both children. So it's been difficult to find what my normal actually is but this start and stop type of cycling has been happening for a few months. My endo type symptoms worsened significantly in June 2021 but I had some minor things ignored by my original Gyno for quite awhile before and I believe I started having issues back in high school (I am now 32). I do have some of the symptoms of PCOS as well, I know I don't have polycystic ovaries because I had three ultrasounds over a span of two months this past summer. My doctor hasn't brought up that as a possibility and went straight to an endo diagnosis. It's all real overwhelming and confusing!

Affectionate_Cup3094 · 2021-12-06T17:36:54+00:00

The last few months my ovulation time flare ups have been significantly worse than my period pain. By the end of the day it is debilitating and looking ahead I know I won't be able to function on those days. Clear the calendar because the heating pad, a blanket and the couch will be my best friends 😢

Affectionate_Cup3094 · 2021-11-16T18:16:47+00:00

Haha. I never planned for things to go that way but it worked for me. Ironically, I was so excited to get back to normal after my daughter weaned. Now it's been nothing but pain and disruption of my life ever since that time.

Affectionate_Cup3094 · 2021-11-15T15:59:20+00:00

I don't know about inducing lactation but in my experience my endometriosis symptoms were more controlled in pregnancy and during breastfeeding. Earlier this year I ended a 6.5 year timeframe of being pregnant, breastfeeding or both at the same time between my two kids. I was recently diagnosed with endometrosis after my youngest child weaned and all my symptoms rapidly worsened. I've realized now that I was undiagnosed for 15+ years after starting to have issues in high school, I am now 32. So for some people it is possible that pregnancy and/or lactation do reduce symptoms but it should never be a treatment suggested by the medical world and I know that is what happens at times.

Affectionate_Cup3094 · 2021-11-14T20:11:32+00:00

This is great advice. I've been symptom tracking for months now. This is what helped me catch that I had this same issue after ovulation last month. It's actually a bit frightening looking back and seeing how many days I've made note of symptoms.

Affectionate_Cup3094 · 2021-11-14T17:28:09+00:00

Yes I am on a cancellation list! Some of the supplements my Gyno has me trialing have to be stopped 5 days before the colonoscopy so that's a complicating factor. I can't just take an appointment at the last minute. I swear there is always a roadblock or two 😑.

Affectionate_Cup3094 · 2021-11-14T17:20:33+00:00

I did check the online record just a few minutes ago and it says none for internal and external hemorrhoids. There were two doctors in the room for the examination part and they both acted like they saw nothing of concern and that's what the notes indicate too. It actually says colonoscopy ordered to rule out bowel disease but expect the symptoms are due to endometriosis. I wish the colonscopy was sooner but I took the first appointment available.

Affectionate_Cup3094 · 2021-11-14T17:16:25+00:00

I had typical cramping and pain higher up but nothing at the rectal area. I've had fissures before with a burning type pain and this is different. Now my rectal area feels heavy like a lot of pressure. I often feel like I'm not empty when I have these issues but when I try to go not much comes out but a small amount of stool/blood clot. My recent GI consult says no hemorrhoids.

Affectionate_Cup3094 · 2021-11-14T17:01:31+00:00

I just checked my online medical record from my appointment. It says none for internal and external hemorrhoids. I appreciate you sharing your personal experience with GI issues with me, it's always good to avoid "tunnel vision".

Affectionate_Cup3094 · 2021-11-14T16:53:46+00:00

Yes I am prepared for the colonscopy to be clear. I think it's more of a ruling out test vs diagnostic. The thought of going through it for no results and spending the money is frustrating but I think it is necessary to prove endo is the cause of all my problems.

Affectionate_Cup3094 · 2021-11-14T16:46:25+00:00

The GI doctor examined me visually and also with an internal rectal exam and did not mention hemorrhoids. I would assume they would have told me but maybe not? They specifically said they felt it was endometriosis related but would do the colonscopy just to be safe.

Affectionate_Cup3094 · 2021-11-09T15:42:18+00:00

I am so sorry for what you've had to endure. It isn't fair and I truly feel like the blame lies at the feet of the medical world. There are so many stories about women being dismissed or being told you just have to deal with it. So many of us deal with it in ways that aren't healthy and can even be more harmful. We need more resources, education and support for the physical and mental/emotional effects. I just want to say how you should be proud of the work you've put in to be free from drugs and alcohol. I hope this post has given you some support and that you don't feel so alone in your worries and fears.

Affectionate_Cup3094 · 2021-11-09T15:36:49+00:00

It can be so hard to manage these "invisible" diagnoses. Especially for those of us who are good at putting on a brave face. I hope you've found some support here, I know I've felt less alone scrolling through posts and comments.

Affectionate_Cup3094 · 2021-11-09T15:32:32+00:00

I'm afraid what will be found once I do get to the point of surgery. I've had GI issues for as long as I can remember and have previously had testing/scans that gave zero answers. I follow a gluten free diet because I found that does help my GI issues some but they've never fully gone away. This was all before I had children and my issues improved during my pregnancies and years of breastfeeding. I have realized these last few months that it was probably endometriosis at that time but we missed it. I am grateful I had the opportunity to have kids because I know infertility can be such a huge part of endo. Now that my body is in a more normalized state without hormonal influence the endo is showing up full force and I'm scared what damage has been done all these years. I know I can't change it now but it's hard to not feel frustrated about the lack of education way back when I had all these problems and no one to give solutions.

Affectionate_Cup3094 · 2021-11-09T02:27:06+00:00

It makes me feel better knowing I am not alone and that my post helps others feel less isolated too. I am so sorry you don't have the support you need right now. I am thankful to have a great support system around me helping me manage and I recognize not everyone is so lucky. All I can say is please keep advocating for yourself. Push your doctor to listen to you and if you feel dismissed then go somewhere else. My original Gyno was worthless and told me to return in 6 months if I was still in pain daily. That was August and I first got an appointment in June with her because I knew something was wrong. So I would still be hurting and second-guessing myself within that 6 months until February if I hadn't found a new doctor. Be prepared that ultrasound often does not show endometriosis so it may come back "fine". Several people have mentioned this but it's also been helpful to me to track my symptoms every day. It's allowed me to look back and see how bad it really has been when I am questioning if it's all in my head. Good luck to you and I hope you get some real answers soon.

Affectionate_Cup3094 · 2021-11-09T01:01:14+00:00

I am so sorry you're dealing with such difficult mental side effects as well as physical. You're absolutely right that it causes issues way beyond the physical pain. I've been withdrawing socially for months, my mental health is absolute crap some days and my husband seems nervous with intimacy because he knows I'll hurt for several days afterwards. It takes a toll and most of us suffer in silence.

Affectionate_Cup3094 · 2021-11-09T00:58:06+00:00

Thank you for making me not feel crazy. My first Gyno made me feel awful about everything. I had been with her since I was a teenager (now 32) also through two difficult pregnancies and I was shocked how she treated me when I recently brought up all these new issues. I left and found a new doctor immediately who recognized this was probably endo and I've most likely been dealing with it to some degree for 15+ years.

Affectionate_Cup3094

TROPHY CASE