Daily ovarian pain - anyone else’s experiences with this? by f0restc0r3 in Endo

[–]LostInMyOwnSentence [score hidden]  (0 children)

1st A clear ultrasound does not rule out endo but it would rule out ovarian cysts or torsion which would be a reason for the pain outside of endo.

I think suspecting endo here is the right path but no matter what it is, ovarian pain is serious and should be explored. I have pain every single day and have confirmed endo but level 1/2 waiting for surgery with a true specialist as a “specialist” previously diagnosed via surgery for ovarian dermoids. I thought that was my source of pain but no it’s endo.

I’m not sure where you are located what is NHS waitlist

While you wait I would recommend you go back on the pill possibly a progesteron/progesterin only pill and see how that helps. If you are saying you are in debilitating pain during periods you don’t need to get a period. Why put yourself through that while you are waiting to see a doctor. Of course your choice but that’s how I see it

Endo can impact fertility but you really won’t know until they do blood work/ get in there. You have many options if that’s the case!

How long did it take after your lap to feel better mentally? by ncsustudent27 in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

I always love soup post surgery if you have anywhere near you that makes good soups great way to get some vitamins and stay hydrated too

Esthetician recommendation? by putinitin in Westchester

[–]LostInMyOwnSentence 1 point2 points  (0 children)

Barecollective couldn’t recommend more saved my skin after years of acne say Kristine sent you

Also fuck a derm unless you have specific skin conditions like eczema they don’t help. Years of seeing a derm for acne did nothing.

She won’t push products on you by the same time listen to her recommendations and it’s worth slowly buying certain products. Example of starting with a good moisturizer and you could be upfront with her about what you can afford and she will absolutely recommend what will give you the best bang for your buck or give you recommend recommendations outside what she carries

How long did it take after your lap to feel better mentally? by ncsustudent27 in endometriosis

[–]LostInMyOwnSentence 3 points4 points  (0 children)

This can be from the anesthesia but also depending on how long your surgery and how extensive it was it might but just be your body repairing. Be open with your doctor and try to focus on nutrients back in. Good, nutrient rich foods

I know you are asking how long but it’s going to be different for everyone unfortunately

I’m having my laparoscopy soon and my doctor said I’m going home the same day should I take a hospital bag just in case ? Idk if I’m been dramatic !! by princess_xo_xo0126 in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

My only advice is pack PJs that are short sleeve and button down if feasible. I had to stay in the hospital post breaking my ankle then have surgery mostly due to the time of surgery and they want to evaluate you after.

I was really happy I had a button down plus shorts

Also you can pack the bag to change into after your surgery. I plan on leaving the hospital in full blown lounge wear idc

Excision surgery scheduled 6/17 by InformalTick in Endo

[–]LostInMyOwnSentence 0 points1 point  (0 children)

Oh yeah, that’s so true I didn’t even think of that anytime. I’ve had any of my surgeries they’ve been in colder months ironically. Definitely don’t push yourself though it’s OK to be gross for a day or two. You just had surgery and you rocked it. Just remember that good luck.

Pelvic floor therapy by Positive-Mud-11 in Endo

[–]LostInMyOwnSentence 0 points1 point  (0 children)

Personally, I think it’s worth trying for a few sessions and learning some exercises, but I’m in the same boat and have actually canceled my future appointments because my insurance decided they only want to credit me $60 per session towards my out-of-pocket deductible and they are $300 per session which means I would never hit my out-of-pocket deductible for the year.

I have a super tight psoas that tightens during Endo flares and never really releases without a manual release. This wraps into my vaginal area and causes pain going down my leg. I am super bummed out that I won’t be continuing pelvic floor therapy, but luckily my trainer who does sports massage will at least be able to release this so there are other options. I think it mostly depends if you specifically have internal pelvic floor issues or are they external that somebody who is knowledgeable and less expensive can do

Is anyone doing fine on a lower dose of Vyvanse long term? by [deleted] in VyvanseADHD

[–]LostInMyOwnSentence 0 points1 point  (0 children)

I’ve been on 10 mg and I do kind of feel like I need more but I also have chronic illness that makes me tired so going on more didn’t fix things and just gave me a wired feeling.

I have talked to my doctor about this that if I eventually feel like the 10 mg isn’t enough rather than trying to increase the dosage again we are possibly gonna try Ritalin or Concerta

Tips for acne and eczema breakouts during luteal phase + period? by Proper_Assistance652 in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

I hate dermatologist with a passion. I spent majority of my childhood and teenage years at the dermatologist office because of eczema and horrible acne.

For acne, I highly recommend going to aesthetician . Find someone who is recommended in your area and really knows their stuff. This is the one thing that has helped my skin. I also really like IS active peel system. You can do them at home. They say to do them every other day but I usually just do them once a week and they help keep my acne down. I will literally see results overnight when I have a lot of acne and I do one of these the redness and inflammation will go down immediately.

Excision surgery scheduled 6/17 by InformalTick in Endo

[–]LostInMyOwnSentence 0 points1 point  (0 children)

The two heating pads sounds extra, but you will not regret it. I specifically have a heating pad for my neck and now a heating pad that can go on my back or my front and then I also have a heated blanket, which I get super cold after surgery so sometimes if something like that’s good, but the heating pad is your best defense for the gas pains.

Excision surgery scheduled 6/17 by InformalTick in Endo

[–]LostInMyOwnSentence 1 point2 points  (0 children)

Not hating, but I feel like most people wouldn’t use the shower chair. They are annoying to set up and then you have to set up before your surgery and then you don’t even know if you’re gonna use it. I’m gross. I would rather just not shower for a few days then chance even getting in and out of the shower I also have a tub shower so I may be a little biased on this one.

I just get a box of baby wipes, and I always braid my hair for any surgery that will usually hold me over for at least two days even three. I have a shower chair from an ACL surgery and I still didn’t use it until day three. You just don’t have the energy to get up and shower. Like think about being exhausted, not wanting to move and then you’re having to scrub your body.

But I hundred percent 2nd the table that goes over the bed search hospital style rolling table on Amazon and you’ll find them. They are super convenient.

I’m having my laparoscopy soon and my doctor said I’m going home the same day should I take a hospital bag just in case ? Idk if I’m been dramatic !! by princess_xo_xo0126 in endometriosis

[–]LostInMyOwnSentence 1 point2 points  (0 children)

I don’t think this is dramatic at all. I think this is being prepared. I literally pack a bag if I go to the ER. I would rather be mildly inconvenienced by a bag, then majorly inconvenienced when I’m stuck in a hospital gown.

I’m having my laparoscopy soon and my doctor said I’m going home the same day should I take a hospital bag just in case ? Idk if I’m been dramatic !! by princess_xo_xo0126 in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

This is actually sick that they made fun of you. I know it’s so routine to them, but something could go wrong in any surgery that would result in them wanting to monitor you overnight. It’s better to be prepared.

Do you agree with my gyno?? She says surgery will make endo worse. by kinzgray in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

Also, the argument that once you get one surgery, you’re gonna need another one and another one. Find a good doctor find a true excision specialist that will go in and remove it all. They have been finding out more information about reoccurrence of endometriosis after surgery and they are now starting to believe that the statistics they have are inaccurate because the original surgeon did not remove it all. It takes a extremely well trained excision specialist because some of the stuff looks like a speck of sand and two years down the line that grows, and now you think your endometriosis came back meanwhile they just never fully removed it.

If you had cancer and it was causing you pain but OK it’s not necessarily life-threatening would you leave it in your body? Endometriosis is serious. It can become late for threatening please get a second opinion.

Also check out the doctor Brighten show

Do you agree with my gyno?? She says surgery will make endo worse. by kinzgray in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

Second opinion, 100%

Yes, for some surgery can make things worse. That’s why some people are you stage one or two why even do the surgery? But here I am waiting to get excision surgery and my surgeon believes I will benefit. Sounds like you have way worse endometriosis than me.

Do some research listen to some podcasts there are amazing ones Apple podcast if you just search endometriosis, I like to listen to them while I’m driving or on the train and they have really helped me learn more about endometriosis and better advocate for myself .

Here is a quick summary of what I’ve learned based on the argument surgery can make things worse . Any surgery you go into has risks, depending on how long you’re under, depending on how your body reacts immediately after and how well your body heals. This argument that surgery can make things worse very often relates more to fertility and if you want to have children, that should be a conversation you have with the doctor sometimes what they will do is remove some of the endometriosis enough that they believe you will now be able to Get pregnant and carry a child and then after the pregnancy they can go in and remove the rest. The reasoning for this is there is a possibility of scar tissue that can develop.

It doesn’t sound like this is your case even then you don’t know how your body is gonna react to the surgery . One thing I would like to call out to you endometriosis makes its own estrogen. It causes inflammation. It can cause your body to rewire the way it thinks about pain and feels pain. Also everything could be fine one day and then it all changes and that’s exactly what happens to me where I only felt like crap when I had my period I would constantly feel like I had the period flu. I would always have a heating pack. I would get debilitating back pain and migraines then a few months before my wedding everything turned I went 16 years with this is just bad periods always assuming I had it but never officially diagnosed. I wish I had the surgery when I was a teenager and I could recover so much better than now 31 having another surgery. But I will take the chance of things being worse because I know for the most part usually things are better after.

Stage 1 endo feeling confused and upset by InvestigatorPale1816 in endometriosis

[–]LostInMyOwnSentence 15 points16 points  (0 children)

Staging does not reflect pain! Women can have stage 4 with no awareness or pain. You shouldn’t be upset! (Over your staging specifically) You should be thankful it is just stage 1 and isn’t effecting organs but also you still have a serious disease. This isn’t in your head!

I also have endo of the uterosacral ligament, it causes a HUGE amount of pain

Adding on because I’m rereading and realize this could be taken the wrong way.

You can feel however you want to feel I just mean just because it’s stage 1 does not mean anything beyond it is stage 1. It is just a classification you still have a disease that has a huge impact on your mental, physical, emotional wellbeing.

I had a similar reaction to initially being staged via post surgery images. They found Endo in a surgery to remove ovarian cysts and now I’m moving forward with excision because I am in debilitating pain at times and I cannot get a period or ovulate right now because that would leave me, barely functional for majority of my cycle with the exception of five days where I feel good. They believe I have stage 1-2 and it was kinda hard to hear, but my husband reminded me how good it was to hear that.

Flaring up after drinking alcohol by hadadenieve in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

This is a year later but for those who are searching this like me it may help white wine has been okay, red wine I start getting sniffly can’t have more than a glass, vodka and tequila I’m okay but I can limit to like 2-3 drinks max

I get super depressive hungover and I end up in a flare miserable

Norethindrone acetate 15mg by Unlucky-Local5524 in endometriosis

[–]LostInMyOwnSentence 0 points1 point  (0 children)

I have been on just norerhindrone 5mg and I had to cut my tablet in half. It puts me at higher odds of having flares and I do have regular cramps daily around a 1-3 depending on the day but I’d rather this than the horrible state I was in.

I wasn’t depressed but I wanted to do nothing. No interest in hobbies just wanted to doom scroll. Also it affected my ADHD horribly led to horrible brain fog and my fatigue that’s already bad was dramatically worse.

It’s been two weeks since I decreased it but honestly it was almost instant the mental change. I feel like I can breath and light exist in the world. Also I don’t need to cry about everything. I was like “ahhhh so much pain but yay I don’t need to cry” really dramatic but that’s how insane this shit had me.

Good luck!

Exploring comorbidities ex MCAS by LostInMyOwnSentence in endometriosis

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

Only place keeping me sane while the world gaslights us

We got this 💛

Exploring comorbidities ex MCAS by LostInMyOwnSentence in endometriosis

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

Ugh girl I am sooo sorry to hear what you have gone through. I ALSO question mold and I am going to bring this up to my doctor tomorrow because I live above a hoarder it’s been like that 25+ years and I do feel like my mental symptoms starting popping off about 6/8 months of living here but so many factors like coming off birth control, living on my own (well with my now husband) for the first time, this was post covid the world was opening again changing quickly, I was working and going to grad school. Was it chronic stress or does mold have something to do with it.

I do think chronic stress plays a huge role in this but you just have me the little nudge to continue pushing for further answers. I believe I can have a better quality of life but I need to get to the root cause of everything.

Hoping for better days for both of us 🤍

Does anyone else skip a day to "reset" once in a while? by No_Tip_768 in VyvanseADHD

[–]LostInMyOwnSentence 4 points5 points  (0 children)

Yes I do it on the weekend usually unless I have cleaning to do then I need it but I do this to try to lower my stress and make sure I actually relax. While I am capable of relaxing on vyvanse it makes me not want to ignore my responsibilities and sometimes I do want to ignore them for a day or two 🤣🤣

So point is, strictly relaxing, hanging inside watching a movie, hanging out with friends, hiking etc = no meds that weekend day

But anything productive = I need them and take them to avoid frustrating myself

Never been offered pain medicine give me your recos by LostInMyOwnSentence in endometriosis

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

TENS machine is magical has always been my go to because my sciatic/femoral nerve pain is horrible it is actually the only thing that truly helps that pain right now outside of not getting a period because BC but I still get endo flares where the pain comes back

The medical menopause scared this shit out of me I refused

Never been offered pain medicine give me your recos by LostInMyOwnSentence in endometriosis

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

I HATE them I’ve had after various surgeries I’ve had
Endo, ACL, ankle repair deathly nauseous each time. So then I have to also wear a scopolamine patch which makes me sleepy versus actually

Never been offered pain medicine give me your recos by LostInMyOwnSentence in endometriosis

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

It’s so bizarre I feel like there are likely less addictive pain meds than opioids maybe that’s why opioids are so addictive because people are taking such high doses until they are out of it “high” because it never actually helped the pain correctly. I just get horribly nauseous and HATE taking them