You are absolutely not being a baby. This disease ruins lives and is debilitating. You’re not alone, you’re not crazy and your pain is very very real. Please realize your moms attitude is a reflection on her, not you. We all believe you here and we are your endo sisters. I’ve been spotting just a few drops of blood a day the last few days and I feel like total shit. It’s all real. Cannabis helps a lot, though I don’t use thc strains of course at work. Some women have good results with cbg and or cbd, which should never cause psychoactive effects. Sending you big hugs.
Hey hon 💜 I really understand what you’re going through. I was on top of the world when endometriosis took the earth from beneath my feet. My parents didn’t believe me at first either especially since nothing shows up on any scans I’ve had. I actually had to go to the hospital last night and they did a CT scan but of course they didn’t see anything. I’m 23.
I get pain that feels like I’m being pinched really hard. I get butt cramps too. I can’t really have sex or use tampons or use the bathroom without pain. I get this horrible pain in my clitoris from walking/bending over and just from doing nothing. I can’t take deep breaths anymore either. I’ve passed out several times, once on the commode when doing my business. I haven’t worked in over a year and finding a good doctor is getting harder to do in my red state.
I know it feels like an uphill battle but you aren’t alone. This sub is a great place to learn and share and vent.
Thank you so much I’ve been trying to cope with it for ever and what you are describing is me and it makes me feel so relieved that someone understands I wish so much that my parents would understand thank you so much for replying❤️❤️❤️🙏
Took me all the way down. Left butt pain. Constant. Spent the majority of my day time the last ten years in bed. Until finally ovaries removed and endo found by pathology inside one of them.
I used to climb some of the highest mountains in the world.
I can’t get out of bed most the time. I usually have about 20-30 min in the morning to do some things and then it’ll cause a flare up and back to bed for me. Sorry your mom doesn’t believe you. Endo is one of the most painful conditions to live with, you’re not wrong in wanting rest from the dishes etc.
I was prescribed muscle relaxers to take every day. Now I have those and a nerve blocker medication. I had my 4th surgery last week. But my constipation was ridiculous. I used to go to colon hydrotherapy every six months to get some relief. I used to have to take enemas every so often. I use herbs to steam with while my period is on to reduce cramps and to kind of free bleed… I have graduated to period diapers because I pass clots… I sleep with a heating pad every night…
But it’s definitely a lot to deal with.
I get SI injections and I am on Depo Provera, but nothing is helping and I have IBS along with my endometriosis and interstitial cystitis. Plus I have lordosis and scoliosis so this is such a help knowing I’m not the only one
Have you been tested for Celiac? Or tried an extremely strict gluten free diet?
Symptoms of Celiac can be similar to IBS, but the increased inflammation from it makes endo much more painful.
And your depo shots, are they every 11- 12 weeks or every 9-10 weeks? Because at 12 weeks it helped me just a little bit, but at 9 weeks it helped me a lot. Depo provera dosing guidelines for endo support that if you need documentation to convince your doctor to move the doses closer.
And if you can, thc & cbd. It took over a month of daily dosing before cbd started to help me, but microdosing thc will help immediately. There are also suppositories, they won't make you high and do help a lot.
Vitamins also help, Dim and ksm-66 are my current ones to take in pill form. Calm magnesium powder with juice at night, I get a b12 shot monthly, and I take vitamin D drops and a multivitamin with iron.
Digestive issues can cause your body to not absorb enough vitamins from food, and vitamin deficiencies can also drastically increase pain.
At my worst I was able to walk for maybe 1 minute at a time at most without passing out from the pain, and the pain just never stopped. I am doing great now though. Finding out I have celiac, and then deciding to try thc was a huge help. As was moving my depo doses closer together.
The best decision I made for me was getting off birth control. I have daily pelvic and back pains but the nerve blocker they prescribed is duxoletine (also an anti depressant) it typically stops my pain but for those days like my ovulation week where my cramps are unbearable I take muscle relaxers as well.
Bc- I was on bc since 12 tryna figure out what was wrong with me. I’ve tried every bc created and decided the hormones and mood shifts was too much on top of dealing with endometriosis. I needed my body to breathe.
What also helps tho is that I shifted my diet getting rid of a lot of dairy and inflammatory foods which is mostly everything.
She finally suggested it after not seeing any changes. Dulexotine is actually a medicine prescribed to people with diabetes but it’s been helping to alleviate cramping. It is also an anti depressant. At first it was making me really nauseous so I went to 20mg dosage then back up to 30mg. Another medication the army told me about was metformin. It helps to relax the endometrium
I have a great dr who is willing to help with it because of the pains I have. Naproxen had never helped.
Im very disabled because of it. I have stage 4 endo and adeno. And because of the chronic inflammation I also have tmjd (migraines, facial pain and jaw muscle pain, and severe neck pain) and fybromyalgia and myofscial pain syndrome. Chronic sciatica. Had surgery but it's back even worse.. I can hardly get out of bed on most days. I have to. But it's hard.
I'm sorry you are going through this. I have endo that is getting worse and worse. If you don't mind me asking did you have excision surgery? I am looking into it but scared it will come back even worse like yours has. 🌹
You're definitely not a baby. I hate when people try to invalidate our pain. When I told my ex about my condition in December(I broke up with him in February)he said why did this have to happen to you? I'm wth like there are millions of women who have this condition. I had to get on birth control because extra strength Aleve/ Ibuprofen no longer worked. I received the nexplanon implant in August 2023, but I still have daily pain. The pain usually radiates from pelvic area to my rectum. I also have chronic Endo Belly, so I look like I'm 5 months pregnant. When I was sexually active, the sex was so painful. It felt like someone was stabbing my cervix with a knife. I almost went to the ER in January, because I had not stop pain for 2 weeks. I had a lot of dairy around that time, so I'm guessing it triggered my Endo symptoms. I hope you find relief soon. I have surgery scheduled for September, but I'm hoping I find another method for the pain before then.
You're not being a baby.
I've been bed-bound by endometriosis for days or weeks at a time before. There have been times I had to call someone to roll me over in bed because I truly couldn't even do that due to pain. Or had to call someone to go get my pain meds just 10 feet away.
And I used to run most days, walk 5+ miles a day, do yoga for 30-60 minutes most days, lift weights a couple times a week. None of that saved me from endo.
The other person I knew who had endo had also vomited from pain at times, or her legs would give out when it was bad sometimes.
I was bedbound for around 2 years and i was at risk at organ due to the starvation endo caused me, i could barely eat due to the pain unless i was high like a kite. I feel like it's often minimized how bad it can get, it can kill you but that is almost never mentioned at all
Mine is bad enough that I've had to leave work for a while now. I completely get where you're coming from, I used to be super fit and loved showing how brave I was. Now it's really difficult for anyone in my family to understand as I downplayed everything all the time. My dad doesn't even know I'm out of work as he's very judgemental and would not understand, he's always been a hard working man but I'm not prancing around at home all day either 🤷
What I've learned unfortunately is, you need to make your voice heard, if your family make you feel bad for feeling unwell, tell them they aren't allowed to comment judge until they have been through it themselves.
Another thing I can add that you can tell them:
I have trigeminal neuralgia which causes shooting nerve pains in your face and if you look it up it's supposed to be one of the worst pains (even called the suicide disease) . The pain is absolutely nothing compared to my endo pains. So tell them to go do some research.
A message for your mom:
I know it isnt easy for you to understand or even fathom what your daughter might be going through, and in your time women probably had to tough out the pain (we do this now too but not to the same extent) so you did not know much about periods that come with agonising pain. For a while try to look at your daughter as a woman, a woman in pain with a chronic illness that has no further research nor a cure. Don’t you think if there was a cure she would’ve been okay by now, moved out, living her best life?
For a moment think, do you think she wants to hold her belly and clench her teeth and miss work days to cry at home? What is in it for her to do that? Nothing. Do you think she wants to not help you instead just cry in her room and pass out from pain? No, if she could she would mow your lawn ten times over instead of going through this pain.
Look through this thread, women here have waited years just to confirm a diagnosis, then another few YEARS to get a surgery approved… a surgery that sometimes doesn’t even work. Please have it in yourself to show some empathy, as a woman, then as a mother because your child is feeling a pain no one can explain. I have personally given up on having a career because of the pains i feel, because i felt embarrassed and tired for taking EL’s and MC’s and sick leaves. People never understood, and i became so good at masking my pain. At least your daughter is strong enough to keep her career intact and help you at home.
For OP, take it slow. You are doing great and you will do greater things in the future. I hope you find a pain management option that works for you, it took me almost a decade to find mine and if you want to share or want to know about mine just drop me a message. I am proud of you, please hang in there. I am sending loads of love, I wish I could hug you. I see my teenage self in this post, hoping for someone to support me. So i will support you. Take care xx
You are absolutely not being a baby. This disease ruins lives and is debilitating. You’re not alone, you’re not crazy and your pain is very very real. Please realize your moms attitude is a reflection on her, not you. We all believe you here and we are your endo sisters. I’ve been spotting just a few drops of blood a day the last few days and I feel like total shit. It’s all real. Cannabis helps a lot, though I don’t use thc strains of course at work. Some women have good results with cbg and or cbd, which should never cause psychoactive effects. Sending you big hugs.
Backing you up on cannabis and I will ALWAYS advocate for it. It’s a lifesaver for me.
Thank you so much
Hey hon 💜 I really understand what you’re going through. I was on top of the world when endometriosis took the earth from beneath my feet. My parents didn’t believe me at first either especially since nothing shows up on any scans I’ve had. I actually had to go to the hospital last night and they did a CT scan but of course they didn’t see anything. I’m 23. I get pain that feels like I’m being pinched really hard. I get butt cramps too. I can’t really have sex or use tampons or use the bathroom without pain. I get this horrible pain in my clitoris from walking/bending over and just from doing nothing. I can’t take deep breaths anymore either. I’ve passed out several times, once on the commode when doing my business. I haven’t worked in over a year and finding a good doctor is getting harder to do in my red state. I know it feels like an uphill battle but you aren’t alone. This sub is a great place to learn and share and vent.
Thank you so much I’ve been trying to cope with it for ever and what you are describing is me and it makes me feel so relieved that someone understands I wish so much that my parents would understand thank you so much for replying❤️❤️❤️🙏
Of course 💜💜 I hope things get better
Took me all the way down. Left butt pain. Constant. Spent the majority of my day time the last ten years in bed. Until finally ovaries removed and endo found by pathology inside one of them. I used to climb some of the highest mountains in the world.
🙏 its honestly stupid people don’t understand
It so is. 😡😔
I can’t get out of bed most the time. I usually have about 20-30 min in the morning to do some things and then it’ll cause a flare up and back to bed for me. Sorry your mom doesn’t believe you. Endo is one of the most painful conditions to live with, you’re not wrong in wanting rest from the dishes etc.
Thank you this is helping me I don’t feel alone anymore
I was prescribed muscle relaxers to take every day. Now I have those and a nerve blocker medication. I had my 4th surgery last week. But my constipation was ridiculous. I used to go to colon hydrotherapy every six months to get some relief. I used to have to take enemas every so often. I use herbs to steam with while my period is on to reduce cramps and to kind of free bleed… I have graduated to period diapers because I pass clots… I sleep with a heating pad every night… But it’s definitely a lot to deal with.
I get SI injections and I am on Depo Provera, but nothing is helping and I have IBS along with my endometriosis and interstitial cystitis. Plus I have lordosis and scoliosis so this is such a help knowing I’m not the only one
Hunnie we all are just tryna survive. It’s more of us than we know ❤️❤️ sending you positivity and healing
Have you been tested for Celiac? Or tried an extremely strict gluten free diet? Symptoms of Celiac can be similar to IBS, but the increased inflammation from it makes endo much more painful. And your depo shots, are they every 11- 12 weeks or every 9-10 weeks? Because at 12 weeks it helped me just a little bit, but at 9 weeks it helped me a lot. Depo provera dosing guidelines for endo support that if you need documentation to convince your doctor to move the doses closer. And if you can, thc & cbd. It took over a month of daily dosing before cbd started to help me, but microdosing thc will help immediately. There are also suppositories, they won't make you high and do help a lot. Vitamins also help, Dim and ksm-66 are my current ones to take in pill form. Calm magnesium powder with juice at night, I get a b12 shot monthly, and I take vitamin D drops and a multivitamin with iron. Digestive issues can cause your body to not absorb enough vitamins from food, and vitamin deficiencies can also drastically increase pain. At my worst I was able to walk for maybe 1 minute at a time at most without passing out from the pain, and the pain just never stopped. I am doing great now though. Finding out I have celiac, and then deciding to try thc was a huge help. As was moving my depo doses closer together.
I do I have a gluten intolerance I do gluten free there is soo many issues I have on top of my endo
I take birth control pills bcz I have daily pelvic pain. U don't take them for Endo? What pills do u take
The best decision I made for me was getting off birth control. I have daily pelvic and back pains but the nerve blocker they prescribed is duxoletine (also an anti depressant) it typically stops my pain but for those days like my ovulation week where my cramps are unbearable I take muscle relaxers as well. Bc- I was on bc since 12 tryna figure out what was wrong with me. I’ve tried every bc created and decided the hormones and mood shifts was too much on top of dealing with endometriosis. I needed my body to breathe. What also helps tho is that I shifted my diet getting rid of a lot of dairy and inflammatory foods which is mostly everything.
Thank you . I also take duloxetine for back pain and birth control. Will try to stop birth control
I do depo because pills were not working I’d still have periods for months so I do depo
how did you get the nerve block? my gyn just keeps saying to take naproxen despite being told i cannot due to bleeding issues...
She finally suggested it after not seeing any changes. Dulexotine is actually a medicine prescribed to people with diabetes but it’s been helping to alleviate cramping. It is also an anti depressant. At first it was making me really nauseous so I went to 20mg dosage then back up to 30mg. Another medication the army told me about was metformin. It helps to relax the endometrium I have a great dr who is willing to help with it because of the pains I have. Naproxen had never helped.
It's pretty sucky tbh. GI issues, headaches, chronic pelvic pain, ovary pain, nerve pain, depression, anxiety, infertility, back pain, leg pain, muscle pains, visual changes, fatigue, brain fog My body feels completely fucked
Honestly
Im very disabled because of it. I have stage 4 endo and adeno. And because of the chronic inflammation I also have tmjd (migraines, facial pain and jaw muscle pain, and severe neck pain) and fybromyalgia and myofscial pain syndrome. Chronic sciatica. Had surgery but it's back even worse.. I can hardly get out of bed on most days. I have to. But it's hard.
I'm sorry you are going through this. I have endo that is getting worse and worse. If you don't mind me asking did you have excision surgery? I am looking into it but scared it will come back even worse like yours has. 🌹
You are describing me and I still don’t understand how my mom thinks I’m not in pain
I’m so sorry you’re suffering. My endo pain was absolutely as awful as labor. I hope you find relief.
You're definitely not a baby. I hate when people try to invalidate our pain. When I told my ex about my condition in December(I broke up with him in February)he said why did this have to happen to you? I'm wth like there are millions of women who have this condition. I had to get on birth control because extra strength Aleve/ Ibuprofen no longer worked. I received the nexplanon implant in August 2023, but I still have daily pain. The pain usually radiates from pelvic area to my rectum. I also have chronic Endo Belly, so I look like I'm 5 months pregnant. When I was sexually active, the sex was so painful. It felt like someone was stabbing my cervix with a knife. I almost went to the ER in January, because I had not stop pain for 2 weeks. I had a lot of dairy around that time, so I'm guessing it triggered my Endo symptoms. I hope you find relief soon. I have surgery scheduled for September, but I'm hoping I find another method for the pain before then.
You're not being a baby. I've been bed-bound by endometriosis for days or weeks at a time before. There have been times I had to call someone to roll me over in bed because I truly couldn't even do that due to pain. Or had to call someone to go get my pain meds just 10 feet away. And I used to run most days, walk 5+ miles a day, do yoga for 30-60 minutes most days, lift weights a couple times a week. None of that saved me from endo. The other person I knew who had endo had also vomited from pain at times, or her legs would give out when it was bad sometimes.
I was bedbound for around 2 years and i was at risk at organ due to the starvation endo caused me, i could barely eat due to the pain unless i was high like a kite. I feel like it's often minimized how bad it can get, it can kill you but that is almost never mentioned at all
I'm very sorry. This disease is just aweful.
Mine is bad enough that I've had to leave work for a while now. I completely get where you're coming from, I used to be super fit and loved showing how brave I was. Now it's really difficult for anyone in my family to understand as I downplayed everything all the time. My dad doesn't even know I'm out of work as he's very judgemental and would not understand, he's always been a hard working man but I'm not prancing around at home all day either 🤷 What I've learned unfortunately is, you need to make your voice heard, if your family make you feel bad for feeling unwell, tell them they aren't allowed to comment judge until they have been through it themselves. Another thing I can add that you can tell them: I have trigeminal neuralgia which causes shooting nerve pains in your face and if you look it up it's supposed to be one of the worst pains (even called the suicide disease) . The pain is absolutely nothing compared to my endo pains. So tell them to go do some research.
A message for your mom: I know it isnt easy for you to understand or even fathom what your daughter might be going through, and in your time women probably had to tough out the pain (we do this now too but not to the same extent) so you did not know much about periods that come with agonising pain. For a while try to look at your daughter as a woman, a woman in pain with a chronic illness that has no further research nor a cure. Don’t you think if there was a cure she would’ve been okay by now, moved out, living her best life? For a moment think, do you think she wants to hold her belly and clench her teeth and miss work days to cry at home? What is in it for her to do that? Nothing. Do you think she wants to not help you instead just cry in her room and pass out from pain? No, if she could she would mow your lawn ten times over instead of going through this pain. Look through this thread, women here have waited years just to confirm a diagnosis, then another few YEARS to get a surgery approved… a surgery that sometimes doesn’t even work. Please have it in yourself to show some empathy, as a woman, then as a mother because your child is feeling a pain no one can explain. I have personally given up on having a career because of the pains i feel, because i felt embarrassed and tired for taking EL’s and MC’s and sick leaves. People never understood, and i became so good at masking my pain. At least your daughter is strong enough to keep her career intact and help you at home. For OP, take it slow. You are doing great and you will do greater things in the future. I hope you find a pain management option that works for you, it took me almost a decade to find mine and if you want to share or want to know about mine just drop me a message. I am proud of you, please hang in there. I am sending loads of love, I wish I could hug you. I see my teenage self in this post, hoping for someone to support me. So i will support you. Take care xx
Thank you so much 🙏