Any Dis ladies have endometriosis?

[MrsCobraBubbles]

Want to tell me about your treatments/remedies?

I don't have an official diagnosis but they are pretty sure that's what it is, maybe complicated with some other stuff. I have to call to make an appointment with a specialist tomorrow but who knows when they will actually get me in to the office, I'm praying it is before my next period. I have to say it is some of the most intense pain I have ever experienced--I'm currently using my Lamaze breathing to get through it. My entire abdomen feels like it is on fire and it's so swollen and distended that I look like I'm 5 months pregnant, and just when I think the pain can't get any worse these waves of cramping go through me and I'm dry-heaving and wishing for unconsciousness. I don't remember childbirth feeling this painful! I haven't been able to eat or drink anything since yesterday morning. The pain has been steadily getting worse over the last six months or so but I've been ignoring it, and then this month I feel like I'm dying, there's no way to ignore it.

Anyway, of course I'm reading up on it on the internet and scaring myself--do I really have to have surgery to be diagnosed? I really don't want that!

What do you take for pain? Ibuprofen alone wasn't doing anything so I tried alternating it with tylenol and it's still not working, then I gave up because I'm pretty sure the medicine was upsetting my stomach more. My doctor was really unhelpful with pain management, didn't even give me a prescription for zofran. I'm also covered in hives head to toe and I want to crawl out of my skin! Unfortunately the hives are something that happens when I'm stressed, the doctor didn't seem to think they were related to whatever is going on.

 

[kimblebee]

Want to tell me about your treatments/remedies?

I don't have an official diagnosis but they are pretty sure that's what it is, maybe complicated with some other stuff. I have to call to make an appointment with a specialist tomorrow but who knows when they will actually get me in to the office, I'm praying it is before my next period. I have to say it is some of the most intense pain I have ever experienced--I'm currently using my Lamaze breathing to get through it. My entire abdomen feels like it is on fire and it's so swollen and distended that I look like I'm 5 months pregnant, and just when I think the pain can't get any worse these waves of cramping go through me and I'm dry-heaving and wishing for unconsciousness. I don't remember childbirth feeling this painful! I haven't been able to eat or drink anything since yesterday morning. The pain has been steadily getting worse over the last six months or so but I've been ignoring it, and then this month I feel like I'm dying, there's no way to ignore it.

Anyway, of course I'm reading up on it on the internet and scaring myself--do I really have to have surgery to be diagnosed? I really don't want that!

What do you take for pain? Ibuprofen alone wasn't doing anything so I tried alternating it with tylenol and it's still not working, then I gave up because I'm pretty sure the medicine was upsetting my stomach more. My doctor was really unhelpful with pain management, didn't even give me a prescription for zofran. I'm also covered in hives head to toe and I want to crawl out of my skin! Unfortunately the hives are something that happens when I'm stressed, the doctor didn't seem to think they were related to whatever is going on.

I don’t have it, but I just wanted to lend my support. I used to beg doctors to give me a hysterectomy due to blinding pain every month. None would. Jokes on them, I got cervical cancer and they had to do it.

I hope you get the answers you’re looking for. Being in pain is no fun. I know sometimes it’s scary to seek treatment and answers, but at least then you’ll know what you’re dealing with.

Best of luck.

 

[mom2rtk]

My own experience with it was some time ago. Not sure of today's techniques, but back when I was diagnosed, it had to be done surgically. And of course nobody wants to do an invasive procedure just to get to a diagnosis (plus I imagine it's not easy to get insurance to pay for that either). I was diagnosed because I was trying to get pregnant and had been diagnosed with bilateral tubal occlusion. So I needed surgery to treat that. I had been highly suspicious for some time that it was endometriosis, but of course there wasn't an easy way to diagnose it. My cyclical pain had gone on for years.

If I recall from your prior posts, don't you have children? Typically pregnancy itself is a good treatment for endometriosis because it gives the body a rest from the monthly endometrial shedding. Most of the stories I heard back in the day were from women who had not had babies. I know mine finally settled down (after years of chronic pain) after my third child, and once I got back on the pill.

I'd be more suspicious that you have something else going on, perhaps an ovarian cyst. And that needs to be checked out ASAP. If there's any remote possibility of a pregnancy, then treat this as an emergency to rule out tubal pregnancy.

If you still suspect endometriosis, then get to a reproductive endocrinologist, someone with a good reputation for laparoscopic surgery.

If it is endometriosis, hormonal treatment might be an option. Sometimes BC pills help. Sometimes they have you do a course of Lupron, which induces a chemical menopause for a few months to stop the monthly hormonal stimulation. I know I have seen a new medication advertised on TV to treat endometriosis. It's something hormonal. But likely very expensive since it's new.

 

[mellvswdw1]

I’m so sorry for your pain. I have been diagnosed with endo since I was 20 and it was found during a laparoscopy. I have had 6 surgeries since my first one, and I’m now 43. I’m scheduled to see my Ob/gyn to see what my next steps are as my pain is back with a vengeance and my periods are out of control. It’s been three years since my last one, and my next step will most likely be a hysterectomy.

Pain meds don’t touch my pain, so I typically find myself popping ibuprofen like candy. My hope for you is that you can get in super fast, but for an official diagnosis, be prepared for your specialist to tell you that surgery is the best way for it to be found. Endo hides, and can attach in really weird places. Lots of prayers for you!

 

[disneychrista]

do I really have to have surgery to be diagnosed?

To know for 100% yes. My daughter had laparoscopy surgery (she was 15) to see if this why she was in so much pain during her period. Unfortunately for her, it was not. So she had the surgery and no diagnoses or relief.

 

[StitchesGr8Fan]

Yes, the only way to diagnose it is with surgery. It won’t show in scans or ultrasounds. For treatment they either do a hysterectomy, laser it off, or use medicine to stop its progression. Most of the medicines are birth control, but I think there might be a new one in the market.

I know you are scared of surgery, but you are better off getting the diagnosis now and getting it taken care of now, before it gets worse. It can spread to other places. Mine has spread to my bladder and intestines and causes issues. They’ve also found endometrial tissue in other parts of the body in some people.

 

[Toolulu22]

I had laparoscopic surgery when my doctor suspected endometriosis. The surgery was not complicated, three small incisions that healed easily and the symptoms cleared very quickly. She wanted me to take Lupron for a few months, but a friend of mine who is a nurse talked me out of it. I regret not taking the Lupron now- because problems I had later on may not have occurred. Overall, the laproscopic surgery was a short procedure- done in the hospital, but I went home the same day. Felt relief immediately from the symptoms.

 

[clutter]

I took BC pills for 15 years without taking a break for a period. It was that bad. When I decided to try to get pregnant, it looked grim. Don't know who was more surprised that it happened on my first try - me or the doctor. (After two surgeries - my 4th and 5th ones - and a short round of Lupron, which was actually better than the testosterone they used in the 80s.) Pregnancy didn't help, it came back just as bad, so back to BC pills for another 15 or so years, then a hysterectomy. I was lucky that I could take BC pills with no side effects (unless it was generic).

Good luck. Unfortunately, finding a good doctor to deal with it is the hardest part.

 

[apirateslifeforme]

I'm an anomaly - stage IV endometriosis with ZERO pain. I didn't believe the doctor at first. When I was trying to have my son and had surgery to "see what's going on," he came back to tell me that "stage four begins at a level of 40. Your level is 114." And my response was, "Uh huh, yeah, sure, whatever." Then he showed me photos...I had one ovary that was adhered to my uterus by the endometrial tissue, and on the other side, the tissue had wrapped around my tube and "choked" it off. There just plain was a LOT of it as well.

I had other surgeries - you name a reproductive issue, I have it. Ovarian cysts, fibroids, polyps, a septum, at one point I was one step away from cancer, etc. Took 3 years to get pregnant with my son (and we had to use donor eggs because I have premature diminished ovarian reserve/premature ovarian failure). Immediately after he was born, my OB insisted on a Mirena IUD, not to prevent pregnancy - because we know that's NOT AT ALL possible! - but to keep all the other problems at bay. It's either that or a hysterectomy, for which my insurance won't pay, of course. Honestly, though, I HATE the IUD. Oh, yeah, I haven't had a period in over 2 years, which is fabulous, but I'm having lots of other problems that I firmly believe are the result of the stupid thing.

I agree with a previous poster who recommends finding a reproductive endocrinologist, even if you're not trying to have a baby. I personally found that they were more knowledgeable about this than gynecologists. Good luck

 

[Moliphino]

I had one ovary that was adhered to my uterus by the endometrial tissue, and on the other side, the tissue had wrapped around my tube and "choked" it off. There just plain was a LOT of it as well.

I've been told I have the same sort of issues with my ovaries (both tangled, at least one completely blocked), but the doctor never brought up endometriosis. This was when I was hospitalized for extreme blood loss from a period and had regular and transvaginal ultrasounds. They confirmed it wasn't fibroids, then just put me on BC and sent me on my way.

 

[JediBonas]

I've been diagnosed with endo without surgery, which I've been told is VERY rare. They saw the endo cysts on an ultrasound and when sent for an MRI (for a different reason) the MRI results also confirmed endo. I've been on continuous BC since diagnosed, my dr won't operate until I'm in menopause or it gets too painful to handle as he will need to take both ovaries. Being in BC and exercising has done wonders for pain, my pain was mostly during ovulation.

 

[Pea-n-Me]

Want to tell me about your treatments/remedies?

I don't have an official diagnosis but they are pretty sure that's what it is, maybe complicated with some other stuff. I have to call to make an appointment with a specialist tomorrow but who knows when they will actually get me in to the office, I'm praying it is before my next period. I have to say it is some of the most intense pain I have ever experienced--I'm currently using my Lamaze breathing to get through it. My entire abdomen feels like it is on fire and it's so swollen and distended that I look like I'm 5 months pregnant, and just when I think the pain can't get any worse these waves of cramping go through me and I'm dry-heaving and wishing for unconsciousness. I don't remember childbirth feeling this painful! I haven't been able to eat or drink anything since yesterday morning. The pain has been steadily getting worse over the last six months or so but I've been ignoring it, and then this month I feel like I'm dying, there's no way to ignore it.

Anyway, of course I'm reading up on it on the internet and scaring myself--do I really have to have surgery to be diagnosed? I really don't want that!

What do you take for pain? Ibuprofen alone wasn't doing anything so I tried alternating it with tylenol and it's still not working, then I gave up because I'm pretty sure the medicine was upsetting my stomach more. My doctor was really unhelpful with pain management, didn't even give me a prescription for zofran. I'm also covered in hives head to toe and I want to crawl out of my skin! Unfortunately the hives are something that happens when I'm stressed, the doctor didn't seem to think they were related to whatever is going on.

I agree w mom2rtk, it sounds like there could be more going on. Your description of your pain, bleeding and swelling reminds me of what I had - mine was progressive over time and I wound up disabled for several months - could not even walk/was screaming in pain all the time, not just monthly/hemorrhaging w several ER visits, etc.). I tried some therapies like progesterone pills and a Mirena, and needed stronger medicine than motrin, but wound up with a hysterectomy and it turned out I had something called adenomyosis, which made complete sense once I understood what it was. My uterus at that time was the size of a four month pregnancy (and it took a long time to get it out - I won't go into the gory details here). It can be difficult to diagnose before hysterectomy, but your best bet, from what I understand, is an MRI. But they will probably start with a vaginal ultrasound to measure the thickness of your endometrial lining and look for structural abnormalities first, and that's ok. (If there are normal findings, though, you might push for an MRI.) Idk if you've done IVF with frozen embryos or had a placenta acretta (both of which I did) but there is newer research that those conditions can lead to later adenomyosis. Just putting that out there for you, OP, and anyone else reading, as it is not well known information. Whatever it is, I hope you can find an answer to your problems as this is not something you can live with easily long term.

 

[DonaldnDaisy5]

I have endometriosis. Due to blood clotting factors diagnosed at 31 hormonal based birth control was no longer an option after our 3rd (lovenox) baby was born.

After deciding we were totally done having kids I had an abalation done on my uterus. It has been wonderful. Little to no pain (little when cysts decide to flair up) and super light periods.

 

[lifesavacation]

I agree w mom2rtk, it sounds like there could be more going on. Your description of your pain, bleeding and swelling reminds me of what I had - mine was progressive over time and I wound up disabled for several months - could not even walk/was screaming in pain all the time, not just monthly/hemorrhaging w several ER visits, etc.). I tried some therapies like progesterone pills and a Mirena, and needed stronger medicine than motrin, but wound up with a hysterectomy and it turned out I had something called adenomyosis, which made complete sense once I understood what it was. My uterus at that time was the size of a four month pregnancy (and it took a long time to get it out - I won't go into the gory details here). It can be difficult to diagnose before hysterectomy, but your best bet, from what I understand, is an MRI. But they will probably start with a vaginal ultrasound to measure the thickness of your endometrial lining and look for structural abnormalities first, and that's ok. (If there are normal findings, though, you might push for an MRI.) Idk if you've done IVF with frozen embryos or had a placenta acretta (both of which I did) but there is newer research that those conditions can lead to later adenomyosis. Just putting that out there for you, OP, and anyone else reading, as it is not well known information. Whatever it is, I hope you can find an answer to your problems as this is not something you can live with easily long term.

I suffer from adenomyosis as well and that’s what I thought of when I read through the OP. It really is very painful. Interesting the link with IVF. I had 2 IVF cycles.

In a weird coincidence, my sister had a hysterectomy due to really painful periods and the pathology came back as adenomyosis. Before my diagnosis, I had never heard of it before.

 

[Pea-n-Me]

I suffer from adenomyosis as well and that’s what I thought of when I read through the OP. It really is very painful. Interesting the link with IVF. I had 2 IVF cycles.

In a weird coincidence, my sister had a hysterectomy due to really painful periods and the pathology came back as adenomyosis. Before my diagnosis, I had never heard of it before.

I had never heard of it, either, until the morning after my surgery when my surgeon came in and told me I had it, then I looked it up. Seeing pictures of what are essentially holes in the uterus, it was no wonder I had so much distress. The IVF link is from using frozen embryos as far as I know (which can lead to placenta acretta, which is associated with a tenfold increase in the incidence of adenomyosis). ETA I don’t think that’s the only way you get adenomyosis, though. Some causes may be unknown.

Here is what it looks like, warning: graphic:

https://radiopaedia.org/cases/adenomyosis-of-the-uterus-gross-pathology-1?lang=us

 

[lilia78]

I was diagnosed with endometriosis when I was 19. Extreme cramping and pain started when I pregnant with my second was what lead my doctor to think that I may have it. I had laparoscopic surgery when my son was 5 months old and diagnosed then. Following my first surgery it was better for a while but slowly all the pain came back. I opted for a hysterectomy when I was 31. During my surgery they removed scarring, endometriosis and also diagnosed me with adenomyosis. At the time they left both of my ovaries saying I was too young to not have them. But issues still followed and my ovaries were removed less than 2 years later.

I tried birth control, mirena iud and lupron but it was determined that a hysterectomy was my best option.

 

[MrsCobraBubbles]

Thanks everyone. I have an appointment with a specialist next week. I'm sorry to hear so many stories of women suffering through the kind of pain I've been dealing with, I wish everyone good health and happiness.

 

[nicolita3]

It could also be fibroids. I had the same symptoms: swelling, bloating, abdomen that felt like it was burning, lots of bleeding. Turns out i had fibroids that made my uterus like i was 5 months pregnant. I ended up getting a hysterectomy.