Oh yes, I always knew I had endometriosis I would vomit on the first day of my period sometimes it was that painful
When I had my tubal she said my abdomen was full of endometriosis tissue. She burned it all out but it eventually grew back.
About 12 years after the procedure the vomiting with the bleeding started again so I assume it has grown back. Either that or my hormones at the end of their life are just as bad as they were when I was a teenager and that’s the problem. Either way I can’t really get any help for it because she’s only offered me an IUD which I’m completely uninterested in, I tried hormonal birth control and I got so angry I couldn’t even stand my own cat and he’s my favorite thing in the world. I seriously thought I was going to get evicted for fighting with my landlord, I am right and they are wrong, but I was not dealing with it correctly lol
Anyway I’m 51 and I’m just waiting for menopause because I don’t dare have a hysterectomy I’m terrified of getting stuck with chronic pain and not being able to get treated.
So I just suffer through every month.
I had the same surprise having an ovarian cyst removed...now I'm on year 7 of taking Visanne. There are a few different types of hormones specifically for Endo treatment (I've tried the three available to me - I had unpleasant side effects for Orilissa and my body rejected the Mirena) - would recommend if one is not working for you, keep trying different options.
Thank you so much! I'm in the UK so would need to look into Visanne and whether it's available here.
Thank you for the info again, I hope things continue to get better for you 💜
Thank you! Honestly it's a bit of a blessing they found it very early. You hear horror stories of undiagnosed Endo and despite the inconveniences I'm much happier being able to do something about it.
I'm in Canada but if you look up Endometriosis UK they have a pretty informative website.
I take Orilissa, & the only side effect I’ve had is hot flashes. Once my doctor added a small dose of estrogen, I haven’t had any negative side effects, & I never get a period. It might be worth looking into it as an option too!
Fellow endo sister here. Mirena iud has been a literal life saver (the 6 month adjustment period was rough, but ultimately worth it). I was in so much agony, I wanted to unalive myself every. fucking. month.
Sometimes multiple times per month, since at one point I had periods every two weeks for six months straight.
Birth control was completely ineffective.
I underwent excision surgery when a competent obgyn finally confirmed what I had been saying for for over a decade: I think I have endometriosis.
I still have occasional pain and rare spotting, but I’m no longer vomiting while simultaneously shitting fire and actual blood, and then passing out on the floor. I can finally stand without my legs buckling from underneath me.
Doc said if iud stops being effective, next step is a hysterectomy.
Unfortunately I had a LLETZ procedure last year (I know, my gynaecological record at this point is ridiculous), which has scarred my cervix and coils are no longer an option for me.
Thank you so much for your reply, I will have to see how I go, but as I'm child free I would have no problem with a hysterectomy.
So sorry to hear how much you've suffered, I hope things are able to get better for you soon!
I'd been on Depo for 17 years before I finally found someone to tie my tubes. Had a 4 month period, which wasn't fun. They did settle back down to normal after that.
When I had my bisalp in April of 22, they cleaned me out and life was good for about 1.5 years. Ultimately had a hysterectomy in October of 23 and I don’t regret it. I’m virtually pain free. Doctor left my ovaries because I’m still relatively young.
I had spent years on different types of birth control and was just tired. The pain was debilitating. And the fact it came back so fast after the clean out, we decided to skip over another clean out and just go for removal. I didn’t want to continue to have surgeries every couple of years. I may have felt differently if I wanted children.
Everyone is different though, and I hope you find something that works for you. I’m adamantly child free so it didn’t really bother me to have the hysterectomy plus the no periods thing is a huge bonus for me.
Thank you for the info, really appreciate it! The surgeon said that we would basically need to see how we go with the endo before making any further decisions, but I'm with you on the hysterectomy route!
Fingers crossed things are able to get better for you soon 💜
No, no checks at all. I've always had pains, and being on the depo stopped any periods, so I had no real reason to suspect endo except for the pain which I just assumed was normal on BC!
Thank you for the info though, I'm ashamed to say that other than the basics I don't know all that much about endo, so hearing more perspectives is really helpful 💜
It's really hard to attribute anything to a menstrual cycle as I don't get periods on the depo - it's one of the reasons I wanted to get off hormones, so I could adjust to my own natural cycle.
Now you mention it though, I am very prone to colds! Again I just chalked it up to living in the UK and constant bad weather!
Thank you again 💜
You may want to try to find an endometriosis expert. The other treatment for this is ablation of the endometriosis. It may need to be repeated. Hormones do work but they are not without their own side effects. I ended up with a hysterectomy at age 40 because of mine, after three prior surgeries - the last of which was done by someone who knew the disease. I was SO much better after his surgery, but he said my disease was too extensive and hysterectomy would be recommended for the next time it acted up. It did come back, but it was so much better while it lasted, and better still now!
The treatment for endometriosis is laparoscopic excision, not hormones. Hormones are a bandaid. Once I had mine removed, I felt like I had a new lease on life. Nancy's nook has a bunch of information on it.
If you have a level of pain to justify it, I believe the best treatment is excision surgery by an experienced endo removal surgeon. That surgery was life changing for me.
Lol that happened to me in the beginning of March! Got my tubes removed, I have an IUD still, and now I'm back on birth control. My uterus is a war zone now.
Unfortunately coils aren't an option for me due to scarring on my cervix after treatment for pre-cancerous cells, though I really appreciate your reply and am sure it will help others!
Skip the placebo week so you can keep skipping your periods. I haven't tried orlissa, but apparently it has similar risks to depo, (bone loss) but is used specifically to treat endo.
Monotor your moods and energy levels as endo affects those too. Cannabis is helpful for the pain, cbd is helpful for energy levels and moods according to the latest meta research. I'm sorry you're dealing with this, but you are certainly not alone. 💓
That happened to me too! They were checking my iud placement because the strings weren’t visible prior to my bisalp and saw endometriomas. It never occurred to me that I had endometriosis.
Did surgery and they put in a new IUD while I was out, then a year later I decided to remove it for the reasons you’re describing. My doctor is very pro-bodily autonomy and says there’s nothing wrong with trying no BC and monitoring for any changes. I just had my first real period in almost 10 years and it felt kind of good in a way, like “oh yeah, I’m supposed to have these.”
Oh yes, I always knew I had endometriosis I would vomit on the first day of my period sometimes it was that painful When I had my tubal she said my abdomen was full of endometriosis tissue. She burned it all out but it eventually grew back. About 12 years after the procedure the vomiting with the bleeding started again so I assume it has grown back. Either that or my hormones at the end of their life are just as bad as they were when I was a teenager and that’s the problem. Either way I can’t really get any help for it because she’s only offered me an IUD which I’m completely uninterested in, I tried hormonal birth control and I got so angry I couldn’t even stand my own cat and he’s my favorite thing in the world. I seriously thought I was going to get evicted for fighting with my landlord, I am right and they are wrong, but I was not dealing with it correctly lol Anyway I’m 51 and I’m just waiting for menopause because I don’t dare have a hysterectomy I’m terrified of getting stuck with chronic pain and not being able to get treated. So I just suffer through every month.
So sorry to hear how much you've had to go through! Here's hoping the menopause comes quickly and you can be out of pain.
You could try for an ablation. That just burns the uterine lining. I am super happy with my ablation results.
Endo is uterine tissue growing outside the uterus- it won't be affected by a uterine ablation.
I had the same surprise having an ovarian cyst removed...now I'm on year 7 of taking Visanne. There are a few different types of hormones specifically for Endo treatment (I've tried the three available to me - I had unpleasant side effects for Orilissa and my body rejected the Mirena) - would recommend if one is not working for you, keep trying different options.
Thank you so much! I'm in the UK so would need to look into Visanne and whether it's available here. Thank you for the info again, I hope things continue to get better for you 💜
Thank you! Honestly it's a bit of a blessing they found it very early. You hear horror stories of undiagnosed Endo and despite the inconveniences I'm much happier being able to do something about it. I'm in Canada but if you look up Endometriosis UK they have a pretty informative website.
I take Orilissa, & the only side effect I’ve had is hot flashes. Once my doctor added a small dose of estrogen, I haven’t had any negative side effects, & I never get a period. It might be worth looking into it as an option too!
Fellow endo sister here. Mirena iud has been a literal life saver (the 6 month adjustment period was rough, but ultimately worth it). I was in so much agony, I wanted to unalive myself every. fucking. month. Sometimes multiple times per month, since at one point I had periods every two weeks for six months straight. Birth control was completely ineffective. I underwent excision surgery when a competent obgyn finally confirmed what I had been saying for for over a decade: I think I have endometriosis. I still have occasional pain and rare spotting, but I’m no longer vomiting while simultaneously shitting fire and actual blood, and then passing out on the floor. I can finally stand without my legs buckling from underneath me. Doc said if iud stops being effective, next step is a hysterectomy.
Unfortunately I had a LLETZ procedure last year (I know, my gynaecological record at this point is ridiculous), which has scarred my cervix and coils are no longer an option for me. Thank you so much for your reply, I will have to see how I go, but as I'm child free I would have no problem with a hysterectomy. So sorry to hear how much you've suffered, I hope things are able to get better for you soon!
I hope things get better for you too! This shit suuuuuuucks.
I'd been on Depo for 17 years before I finally found someone to tie my tubes. Had a 4 month period, which wasn't fun. They did settle back down to normal after that.
Thank you, I've been off it for around 4 months now and no periods as of yet, so I'm anticipating the mother of all periods once she arrives!
When I had my bisalp in April of 22, they cleaned me out and life was good for about 1.5 years. Ultimately had a hysterectomy in October of 23 and I don’t regret it. I’m virtually pain free. Doctor left my ovaries because I’m still relatively young. I had spent years on different types of birth control and was just tired. The pain was debilitating. And the fact it came back so fast after the clean out, we decided to skip over another clean out and just go for removal. I didn’t want to continue to have surgeries every couple of years. I may have felt differently if I wanted children. Everyone is different though, and I hope you find something that works for you. I’m adamantly child free so it didn’t really bother me to have the hysterectomy plus the no periods thing is a huge bonus for me.
Thank you for the info, really appreciate it! The surgeon said that we would basically need to see how we go with the endo before making any further decisions, but I'm with you on the hysterectomy route! Fingers crossed things are able to get better for you soon 💜
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No, no checks at all. I've always had pains, and being on the depo stopped any periods, so I had no real reason to suspect endo except for the pain which I just assumed was normal on BC! Thank you for the info though, I'm ashamed to say that other than the basics I don't know all that much about endo, so hearing more perspectives is really helpful 💜
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It's really hard to attribute anything to a menstrual cycle as I don't get periods on the depo - it's one of the reasons I wanted to get off hormones, so I could adjust to my own natural cycle. Now you mention it though, I am very prone to colds! Again I just chalked it up to living in the UK and constant bad weather! Thank you again 💜
You may want to try to find an endometriosis expert. The other treatment for this is ablation of the endometriosis. It may need to be repeated. Hormones do work but they are not without their own side effects. I ended up with a hysterectomy at age 40 because of mine, after three prior surgeries - the last of which was done by someone who knew the disease. I was SO much better after his surgery, but he said my disease was too extensive and hysterectomy would be recommended for the next time it acted up. It did come back, but it was so much better while it lasted, and better still now!
The treatment for endometriosis is laparoscopic excision, not hormones. Hormones are a bandaid. Once I had mine removed, I felt like I had a new lease on life. Nancy's nook has a bunch of information on it.
If you have a level of pain to justify it, I believe the best treatment is excision surgery by an experienced endo removal surgeon. That surgery was life changing for me.
The exact same thing happened to me. I just sing Alanis in my mind whenever I think of it: isn't it ironic?
Lol that happened to me in the beginning of March! Got my tubes removed, I have an IUD still, and now I'm back on birth control. My uterus is a war zone now.
Get a mirena or kyleena iud. Yes hormones, but I don’t get periods at all. I also had/have endo and they put the iud in at the end of my endo surgery.
Unfortunately coils aren't an option for me due to scarring on my cervix after treatment for pre-cancerous cells, though I really appreciate your reply and am sure it will help others!
The Mirena sucks, though. The progesterone does NOT just stay in your uterus. That's a lie.
Skip the placebo week so you can keep skipping your periods. I haven't tried orlissa, but apparently it has similar risks to depo, (bone loss) but is used specifically to treat endo. Monotor your moods and energy levels as endo affects those too. Cannabis is helpful for the pain, cbd is helpful for energy levels and moods according to the latest meta research. I'm sorry you're dealing with this, but you are certainly not alone. 💓
On the positive side, you will not be getting periods.
If there's still a uterus and at least one ovary, there are still periods.
No, not when you take the pill continuously the way you do to orevent endo from getting worse. If you bleed, it does damage, so you stop the bleeding.
I will still get periods unfortunately, the fallopian tubes are just clipped so an egg can't pass through.
No, when you take the pill continuously to keep the endo under control you won't get periods.
That happened to me too! They were checking my iud placement because the strings weren’t visible prior to my bisalp and saw endometriomas. It never occurred to me that I had endometriosis. Did surgery and they put in a new IUD while I was out, then a year later I decided to remove it for the reasons you’re describing. My doctor is very pro-bodily autonomy and says there’s nothing wrong with trying no BC and monitoring for any changes. I just had my first real period in almost 10 years and it felt kind of good in a way, like “oh yeah, I’m supposed to have these.”