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  Damn Yankee
Posts: 12390
   
Location: Somewhere between raising hell and Amazing Grace | A female issue, unfortunately, not a horse issue.
I know from my recent posts on here that there are several board buddies who either have been diagnosed, think they have, or know someone who has Endometriosis.
I have always known I have had it. Hence the main reason for staying on BC half my life.
But when the side affects from BC got way more then I wanted to live with, I came off, and the endo apparently decided to take over. As many of you know I just had surgery this past friday to detach my colon which had adhered to my uterus, remove spots of endo, and see what else was going on. Good news was the uterus and ovaries looked very healthy considering. Bad news is obvious, this is a life long condition. Now I go back in four weeks to discuss long term care, options, treatments, etc etc.
But I want to hear your experiences. How do you cope, what have you tried, what works, what doesn't work, how much does diet play a role? Hindsight 20/20, there was one major symptom I have had for about two years that should have told me something wasn't right but I didn't pay attention to it, so now I'm curious to learn as much as I can. |
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 Expert
Posts: 4121
Location: SE Louisiana | Whatever you do........... take some advice from someone that lived and worked in your area for 40 years...
AVOID the hospitals at FLW and Rolla.... |
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 I Prefer to Live in Fantasy Land
Posts: 64864
Location: In the Hills of Texas | I had it and had a complete hysterectomy when I was 30 years old. Would do it again in a heartbeat.
Hope you get answers to get you through this.
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla....
Komet it's funny you say that. It really is. I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. I had two surgeries in the past. One on my noggin back in 1998 and my spine surgery in 2005. Both civilian hopstials. Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Either I got lucky or times have changed :) |
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Expert
Posts: 4121
Location: SE Louisiana | missroselee - 2014-03-11 3:05 PM
komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla....
Komet it's funny you say that. Â It really is. Â I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. Â I had two surgeries in the past. Â One on my noggin back in 1998 and my spine surgery in 2005. Â Both civilian hopstials. Â Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Â Either I got lucky or times have changed :)
Times must have changed MRL.. Good for you!!!  |
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 Swiffer PIcker Upper
Posts: 4015
Location: Four Corners Colorado | My doctor said I most likely had it and had cramps so bad I would get sick and puke from the pain. I'd spend my whole cycle curled up with a heating pad on the bathroom floor. These days I pretty much take BC year round and don't have a regular period. Up until recently my BC would give me morning sickness if I didn't take it at night and go directly to sleep, or if I took it in the morning. I finally got on a low dose pill and that fixed the morning sickness problem.
ETA: diet is huge the same changes I made for my R.A. helped me a ton when I do have a period on my BC. However I've been to scared of the pain to quit taking the BC.
Edited by equussynergy 2014-03-11 3:10 PM
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | Nevertooold - 2014-03-11 4:02 PM I had it and had a complete hysterectomy when I was 30 years old. Would do it again in a heartbeat.
Hope you get answers to get you through this.
My current OB told me that based on my condition, that if I wanted it, they would in fact do a hysterectomy. After of course we talked extensively about the pros and cons. He said there would be issues with hormones etc but also treatments to those.
To be perfectly honest, I don't want to go that route. Hubby and I have talked extensively. We do not know if we want to try to have a child. We do know that we will not go the fertility route. We have our reasons. But at the same time we do know that even though we don't know about a child, we know we don't want to take away the possilbilty if there is still a slight chance.
Here is my HOPE....I have lived 34 years on this earth, and I was diagnosed with endo as a teenager (that's where BC came into play to control it). I have since spent my life on BC, going off every 2-3 years and staying off for a year at a time to give my body a break. Thus far I personally feel it was something I can live with. So I'm hoping I can continue to live with it.
I know the most important start is my next appointment and talking to the doctor. But I figure if I can talk about it now with women who know more then myself, then I can have more knowledge to take to my appointment :) |
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | komet. - 2014-03-11 4:07 PM missroselee - 2014-03-11 3:05 PM komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla.... Komet it's funny you say that. It really is. I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. I had two surgeries in the past. One on my noggin back in 1998 and my spine surgery in 2005. Both civilian hopstials. Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Either I got lucky or times have changed :) Times must have changed MRL.. Good for you!!!
Or I got lucky. But let's just hope it's because times have changed. I have yet to hear anything poor about the care at the ER and hospital. Besides the normal whiny spouse who lives for drama. |
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | equussynergy - 2014-03-11 4:07 PM My doctor said I most likely had it and had cramps so bad I would get sick and puke from the pain. I'd spend my whole cycle curled up with a heating pad on the bathroom floor. These days I pretty much take BC year round and don't have a regular period. Up until recently my BC would give me morning sickness if I didn't take it at night and go directly to sleep, or if I took it in the morning. I finally got on a low dose pill and that fixed the morning sickness problem.
ETA: diet is huge the same changes I made for my R.A. helped me a ton when I do have a period on my BC. However I've been to scared of the pain to quit taking the BC. Can I ask what you use for BC? Do you know if its estrogen or progestogen?
Edited to add I have a nurse who is specializing in endo care help me with researching a diet plan just to see what may help.
Edited by missroselee 2014-03-11 3:15 PM
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 Neat Freak
Posts: 11216
Location: Wonderful Wyoming | I don't have any advice, my grandma and cousin both had it terrible. My grandma has had some miscarriages and ended up with 2 healthy boys. She had a hystorectmy later. My cousin doesn't want kids, and is on BC similar to what you have done. I hope you get some answers. |
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Expert
Posts: 4121
Location: SE Louisiana | missroselee - 2014-03-11 3:13 PM
komet. - 2014-03-11 4:07 PM missroselee - 2014-03-11 3:05 PM komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla.... Komet it's funny you say that. Â It really is. Â I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. Â I had two surgeries in the past. Â One on my noggin back in 1998 and my spine surgery in 2005. Â Both civilian hopstials. Â Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Â Either I got lucky or times have changed :) Times must have changed MRL.. Good for you!!!
Well... I grew up an AF brat... So I never saw anything but Army doctors aside from my mom's folks who were both licensed Naprapaths.. (But only Grandpa practiced) I don't have good memories of Army doctors.. |
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | komet. - 2014-03-11 4:27 PM missroselee - 2014-03-11 3:13 PM komet. - 2014-03-11 4:07 PM missroselee - 2014-03-11 3:05 PM komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla.... Komet it's funny you say that. It really is. I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. I had two surgeries in the past. One on my noggin back in 1998 and my spine surgery in 2005. Both civilian hopstials. Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Either I got lucky or times have changed :) Times must have changed MRL.. Good for you!!! Well... I grew up an AF brat... So I never saw anything but Army doctors aside from my mom's folks who were both licensed Naprapaths.. (But only Grandpa practiced ) I don't have good memories of Army doctors..
Ok, you got me...what in the world is a Naprapath? |
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Expert
Posts: 4121
Location: SE Louisiana | missroselee - 2014-03-11 3:31 PM
komet. - 2014-03-11 4:27 PM missroselee - 2014-03-11 3:13 PM komet. - 2014-03-11 4:07 PM missroselee - 2014-03-11 3:05 PM komet. - 2014-03-11 4:00 PM Whatever you do........... take some advice from someone that lived and worked in your area for 40 years... AVOID the hospitals at FLW and Rolla.... Komet it's funny you say that. Â It really is. Â I specifically requested to see the OB/GYN on the base hospital per references from a ton of people. Â I had two surgeries in the past. Â One on my noggin back in 1998 and my spine surgery in 2005. Â Both civilian hopstials. Â Both went great.
But this past surgery, on base, well...the care I received there from beginning to end was by far SUPERIOR to the care I received from the first two surgeries. Â Either I got lucky or times have changed :) Times must have changed MRL.. Good for you!!! Well... I grew up an AF brat... So I never saw anything but Army doctors aside from my mom's folks who were both licensed Naprapaths.. (But only Grandpa practiced ) I don't have good memories of Army doctors..
Those were the forerunner to chiropractors... They came before.... |
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 Thick and Wavy
Posts: 6102
Location: Nebraska | I have a slug of things going on, but being on BC all the time has helped the most. I was on a 3 month pill (Seasonique) but I would get super sick when I went off the pill for that week every 3 months. The final straw was me having a hot flash so bad I was dripping in sweat in the middle of the winter at clinicals for over an hour. Now, I'm taking it non stop and haven't had an issue. My doctor said my body doesn't need a break and if it does, I will just bleed through. So far it's been about 3 months. I also have IBS and after my surgery the doc didn't know if my pain every month was caused from my IBS or endo because they couldn't biopsy the spot he found. Anyway, he prescribed a pill for IBS called Linzess and I haven't had pains since, but I do get really sick if I don't take the pill. It's a new medication, so BCBS won't cover it but I was lucky enough that my Tricare does. Changing to a Paleo diet helped me feel better but didn't take away the pains. I tried that before the surgery to try to rule out any GI issue. If the Linzess didn't help, my next option was going on the hormone treatment that basically puts you into menopause for lack of a better word. With that, you get all the side effects from being in menopause such as hot flashes, night sweats, and you can lose your bone density. I wish I could remember the name of it, but I think it was a shot that you went in something like once a month for. |
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Swiffer PIcker Upper
Posts: 4015
Location: Four Corners Colorado | missroselee - 2014-03-11 2:14 PM equussynergy - 2014-03-11 4:07 PM My doctor said I most likely had it and had cramps so bad I would get sick and puke from the pain. I'd spend my whole cycle curled up with a heating pad on the bathroom floor. These days I pretty much take BC year round and don't have a regular period. Up until recently my BC would give me morning sickness if I didn't take it at night and go directly to sleep, or if I took it in the morning. I finally got on a low dose pill and that fixed the morning sickness problem.
ETA: diet is huge the same changes I made for my R.A. helped me a ton when I do have a period on my BC. However I've been to scared of the pain to quit taking the BC. Can I ask what you use for BC? Do you know if its estrogen or progestogen?
Edited to add I have a nurse who is specializing in endo care help me with researching a diet plan just to see what may help.
My doctor put me on Amethia Lo. So far it has been great compaired to the other pills they had me on. |
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | brlracerchick - 2014-03-11 4:40 PM I have a slug of things going on, but being on BC all the time has helped the most. I was on a 3 month pill (Seasonique) but I would get super sick when I went off the pill for that week every 3 months. The final straw was me having a hot flash so bad I was dripping in sweat in the middle of the winter at clinicals for over an hour. Now, I'm taking it non stop and haven't had an issue. My doctor said my body doesn't need a break and if it does, I will just bleed through. So far it's been about 3 months. I also have IBS and after my surgery the doc didn't know if my pain every month was caused from my IBS or endo because they couldn't biopsy the spot he found. Anyway, he prescribed a pill for IBS called Linzess and I haven't had pains since, but I do get really sick if I don't take the pill. It's a new medication, so BCBS won't cover it but I was lucky enough that my Tricare does. Changing to a Paleo diet helped me feel better but didn't take away the pains. I tried that before the surgery to try to rule out any GI issue. If the Linzess didn't help, my next option was going on the hormone treatment that basically puts you into menopause for lack of a better word. With that, you get all the side effects from being in menopause such as hot flashes, night sweats, and you can lose your bone density. I wish I could remember the name of it, but I think it was a shot that you went in something like once a month for.
I think it's called Lupron |
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Thick and Wavy
Posts: 6102
Location: Nebraska | missroselee - 2014-03-11 3:50 PM brlracerchick - 2014-03-11 4:40 PM I have a slug of things going on, but being on BC all the time has helped the most. I was on a 3 month pill (Seasonique) but I would get super sick when I went off the pill for that week every 3 months. The final straw was me having a hot flash so bad I was dripping in sweat in the middle of the winter at clinicals for over an hour. Now, I'm taking it non stop and haven't had an issue. My doctor said my body doesn't need a break and if it does, I will just bleed through. So far it's been about 3 months. I also have IBS and after my surgery the doc didn't know if my pain every month was caused from my IBS or endo because they couldn't biopsy the spot he found. Anyway, he prescribed a pill for IBS called Linzess and I haven't had pains since, but I do get really sick if I don't take the pill. It's a new medication, so BCBS won't cover it but I was lucky enough that my Tricare does. Changing to a Paleo diet helped me feel better but didn't take away the pains. I tried that before the surgery to try to rule out any GI issue. If the Linzess didn't help, my next option was going on the hormone treatment that basically puts you into menopause for lack of a better word. With that, you get all the side effects from being in menopause such as hot flashes, night sweats, and you can lose your bone density. I wish I could remember the name of it, but I think it was a shot that you went in something like once a month for. I think it's called Lupron
yup, that sounds right. It's been a couple years. |
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Damn Yankee
Posts: 12390
Location: Somewhere between raising hell and Amazing Grace | brlracerchick - 2014-03-11 5:12 PM missroselee - 2014-03-11 3:50 PM brlracerchick - 2014-03-11 4:40 PM I have a slug of things going on, but being on BC all the time has helped the most. I was on a 3 month pill (Seasonique) but I would get super sick when I went off the pill for that week every 3 months. The final straw was me having a hot flash so bad I was dripping in sweat in the middle of the winter at clinicals for over an hour. Now, I'm taking it non stop and haven't had an issue. My doctor said my body doesn't need a break and if it does, I will just bleed through. So far it's been about 3 months. I also have IBS and after my surgery the doc didn't know if my pain every month was caused from my IBS or endo because they couldn't biopsy the spot he found. Anyway, he prescribed a pill for IBS called Linzess and I haven't had pains since, but I do get really sick if I don't take the pill. It's a new medication, so BCBS won't cover it but I was lucky enough that my Tricare does. Changing to a Paleo diet helped me feel better but didn't take away the pains. I tried that before the surgery to try to rule out any GI issue. If the Linzess didn't help, my next option was going on the hormone treatment that basically puts you into menopause for lack of a better word. With that, you get all the side effects from being in menopause such as hot flashes, night sweats, and you can lose your bone density. I wish I could remember the name of it, but I think it was a shot that you went in something like once a month for. I think it's called Lupron
My doctor brought it up at my first appointment as one of the treatments they do for it, but said it can have horrendous side affects. I'll know more what his thoughts are when I see him again April 7th.
All I can tell you right now, even as much pain as I am still in from the actual surgery, that whatever persistent pain was there prior is now gone :) |
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Thick and Wavy
Posts: 6102
Location: Nebraska | missroselee - 2014-03-11 4:14 PM brlracerchick - 2014-03-11 5:12 PM missroselee - 2014-03-11 3:50 PM brlracerchick - 2014-03-11 4:40 PM I have a slug of things going on, but being on BC all the time has helped the most. I was on a 3 month pill (Seasonique) but I would get super sick when I went off the pill for that week every 3 months. The final straw was me having a hot flash so bad I was dripping in sweat in the middle of the winter at clinicals for over an hour. Now, I'm taking it non stop and haven't had an issue. My doctor said my body doesn't need a break and if it does, I will just bleed through. So far it's been about 3 months. I also have IBS and after my surgery the doc didn't know if my pain every month was caused from my IBS or endo because they couldn't biopsy the spot he found. Anyway, he prescribed a pill for IBS called Linzess and I haven't had pains since, but I do get really sick if I don't take the pill. It's a new medication, so BCBS won't cover it but I was lucky enough that my Tricare does. Changing to a Paleo diet helped me feel better but didn't take away the pains. I tried that before the surgery to try to rule out any GI issue. If the Linzess didn't help, my next option was going on the hormone treatment that basically puts you into menopause for lack of a better word. With that, you get all the side effects from being in menopause such as hot flashes, night sweats, and you can lose your bone density. I wish I could remember the name of it, but I think it was a shot that you went in something like once a month for. I think it's called Lupron
All I can tell you right now, even as much pain as I am still in from the actual surgery, that whatever persistent pain was there prior is now gone :)
That's why my doctor was trying everything he could try first, especially because I was only 20 when I started seeing him and 21 when I had the surgery. I had been battling the pain for 5 years and was ready to do anything to get rid of it. He also told me I could try to get pregnant before we tried the Lupron because sometimes pregnancies help endometriosis, but that was out of the question. I'm married but I'm not going to try to have a kid just to attempt to get rid of a medical condition...He was just really against putting me on it unless there were no other options.The Linzess was just a stab in the dark that happened to work so far. Glad your pain is gone and I hope you can get more answers at your appointment! |
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 Dr. Ruth
Posts: 9891
Location: Blissfully happy Giants fan!!! | I don't exactly have endo but I have some similar things so I will share. When I was 22 I was talking to my step-mom and I straight up blacked out. And then continued to do so for another 4 hours while trying to get into the ER. By the time they got me back and confirmed that me telling them I wasn't pregnant wasn't true, I couldn't lay down. It felt like someone was taking my lungs and squeezing them and choking me at the same time.
They were only supposed to go in for exploratory surgery but when they went through my belly button all they saw was blood and no where that it was supposed to be. So, they opened me up. I have a scar that starts at my sternum and ends below my belly button.
Turns out they looked up instead of down. And knicked my intestines while they were at it. The blood came from a cyst the size of a golf ball that ruptured so hard it put a hole in my uterus. They have since found that at certain points (never consistently) you can ultra sound and never be able to see my ovaries as they are so covered in cysts it is a huge web. And then go back a couple of days later and not one is to be found.
Anywho, whatever they did in there, combined with the other issue, was causing me to be sick every 3-4 months. Got to a point where it hospitalized me two other times (the last of which a doctor collapsed a lung exploring-nice).
After about 5 years, I have found a few things that work. Like others said, diet is key. I can't eat certain foods-nuts being one. Eating after about 4 also gives me crazy problems. So does breakfast though I eat like a piece of toast or a couple of pieces of bacon. I eat lunch and maybe a snack but that is about it. All healthy 90% of the time. Lots of water.
Exercise doesn't help these issues for me but I do it for other reasons.
They keep my female parts "asleep" permanently basically. RIght now the depo shot works combined with acupuncture. They have to switch it up every once in a while though. If my ovaries are producing, I am screwed.
I see my acupuncturist every other week. He specifically works on making sure my stomach keeps moving. And then anything else I am complaining about. In my opinion, it has been the acupuncture that has been the most helpful. Thankfully I had a great acupuncturist in California who taught me how to approach acupuncture correctly.
Lastly, I have to monitor my stress levels. It is what triggers the hospitalization when it gets that severe. My body will literally shut itself down. I am a very busy person. I go nonstop from 5am until 10pm almost every single day. I nowknow trigger signs. If I am going to be stressed heavily, I take a break. My bosses know if I say I need to stay home I need to stay home. And I don't read emails, work, etc. I haven't done that in about a year but I know when I need to stop. My husband is also well aware of when I am getting to those points. If i don't see it, he will and I shut down and don't do anything. It doesn't happen near as much as I focus A LOT on staying positive and not dwelling on anything negative and making sure I stay in a good frame of mind always. But it happens.
Oh, something new for me but massages are AMAZING. My boss noticed my stress levels accelerating a few months ago and told me to go get a massage. OMG I felt like a new person. I don't get them a lot but I wish I did!!
Anyways, those are my experiences. For me personally I wish they would take it all out but I am living with it and have adjusted so I am ok. |
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