Anyone with endometriosis?

[spiritbear]

Hi ladies. I believe I may finally have the answer to my unexplained diagnosis and difficulty ttc... With a history of menstrual pain so painful I tend to pass out of throw up (since age 12... who knew that wasn't normal?) and 2.5 weeks of pretty intense pain after ovulation and difficulty ttc it seems like the likely candidate.

All of my fertility testing came back normal including the hcg and my progesterone (I actually had slightly low estrogen). They do not recommend doing further testing for endo as it can create more scar tissue and could not be definitive.

I'm wondering what other peoples' experiences are with endo. I feel like I already practice all of the lifestyle changes recommended (avoid toxins like plastics and cleaners, eat a healthy & organic non-inflammatory diet, castor oil packs, use the diva cup, exercise etc.) but I find myself looking for something else to do.

What do you do to handle endo-related pain? I would love to hear anyone else's experiences

 

[spiritbear]

Nobody?

 

[dontworry]

I was diagnosed last year after a lifetime of painful cramps before, during and after my period. I have not been properly diagnosed with a laproscopic surgery as the doctors would rather fill me with birth control, which I refuse.

I don't have any advice as far as pain relief, as my doctors (and I've seen 4 lol) all refuse to give me anything other than Ibuprofen for it. They encourage exercise though when I am in pain, moving is hard, therefore exercise is impossible lol.

Your best bet is to find a specialist, though they seem to be far and few here in California - hopefully you're somewhere with better options! Have you had surgery? Excision?

 

[spiritbear]

thanks and sorry to hear you were diagnosed with it. No, I'm in the same situation as you- doctors don't recommend surgery or anything else useful.

I do have a good acupuncturist and naturopath that are helping me a lot. It's just hard when you can't be in complete control... I feel like I am doing so much to help it and I wish it would get better!!

Best of luck to you

 

[dontworry]

Are you on birth control? How bad is your pain and how often? Did they offer you Lupron or anything else? I've seen an acupuncturist last year though I can't afford to see her regularly and in order for it to work, it needs to be routinely. Blah!

It's so nice to know there are others in the same boat, though I imagine it's just as stressful and depressing sometimes for you Wouldn't wish that on anyone!

 

[spiritbear]

I agree!

No birth control since we are technically trying to conceive and I don't want it to mess with my hormones anyway.

No, my doctor hasn't offered anything. It's pretty bad... basically as soon as I ovulate, I get intense low back and uterus cramping for 17 days. When my period comes, it is unbearable for about 2-3 days and then I feel fine until I ovulate again. What about you??

I'm trying castor oil packs every other day this whole month, so I'm hoping that will make a difference. Also, I saw this guy that does Visceral Manipulation (like a chiropractor for your internal organs) and he said my uterus was fused to my colon with endometrial tissue... he fixed that so I'm really hoping to see a difference soon form that (last month was even worse than normal and that was right after I saw him, so hopefully this month will be better now that it's had time to situate a bit..)

my insurance covers acupuncture luckily and it has helped a lot. It's just frustrating because I feel like with all that I'm doing, it should be better by now! But, things don't quit work that way I guess. Patience..

Are you guys currently trying to conceive? What has this all been like for you?

 

[dontworry]

We are on a break from TTC at the moment - I've been trying for 3 and a half years with no pregnancies whatsoever. Dealing with a stability of my partner at the moment so the baby business has been put on hold.

The first thing every doctor suggests to me is Lupron, which puts your body into a fake menopausal state, stopping all periods and hormones. However it causes bone loss and a TON of other issues, including being terrible for migraine sufferers (I have chronic migraines!) so it's not really an option for me despite everyone trying to shove it down my throat! Birth control is the second option and my doctors have put me on several versions, all of which cause me more pain and hassle than they are worth!

I have always had bad periods, but since my mom had them, she thought it was "normal". The pain got really bad last year and I was sent to the ER 3 times in a matter of 3 weeks, each time being sent back home with nothing - no idea what was wrong. The OBGYN told me it was "probably Endometriosis" but would not give me surgery to properly diagnose (the only way you can be properly diagnosed is after laproscopic surgery) due to my weight (overweight). The next 3 doctors said the same thing, probably Endo but all they can offer is birth control or Lupron. I actually went on Disability because my pain is constant, daily pain radiating from my uterus (I have actual contractions as though I'm giving birth!) and also from my ovaries. I am now back at work in a different job because Endo isn't recognized as a Disability here yet, and I am not offered anything for the pain because I made the mistake of telling them that I tried pot once to get rid of the cramps! So I am now a drug seeking liar or something.

Endo seriously sucks!

 

[Janers]

I have endometriosis. I've always had very painful and heavy periods, I never realized it could be caused by something, I honestly thought it was "normal".

I was diagnosed after having laproscopic surgery in 2011. I had been trying to conceive for 1.5 years, and they did the surgery to see if they could find an explanation as to why i'm not conceiving. Turns out i had endo. Big bummer.

Anyway- I did concieve, and I have a beautiful 2.5 year old now.

I'm now trying for baby #2, I've been trying for 9 months. I'm hoping I'm not heading in the same direction as before.

(I hope I'm allowed to post in the LTTC section. I know i'm not at the LTTC point, but I find I relate to this section far more then the regular trying to conceive forum.)

 

[spiritbear]

We are on a break from TTC at the moment - I've been trying for 3 and a half years with no pregnancies whatsoever. Dealing with a stability of my partner at the moment so the baby business has been put on hold.

The first thing every doctor suggests to me is Lupron, which puts your body into a fake menopausal state, stopping all periods and hormones. However it causes bone loss and a TON of other issues, including being terrible for migraine sufferers (I have chronic migraines!) so it's not really an option for me despite everyone trying to shove it down my throat! Birth control is the second option and my doctors have put me on several versions, all of which cause me more pain and hassle than they are worth!

I have always had bad periods, but since my mom had them, she thought it was "normal". The pain got really bad last year and I was sent to the ER 3 times in a matter of 3 weeks, each time being sent back home with nothing - no idea what was wrong. The OBGYN told me it was "probably Endometriosis" but would not give me surgery to properly diagnose (the only way you can be properly diagnosed is after laproscopic surgery) due to my weight (overweight). The next 3 doctors said the same thing, probably Endo but all they can offer is birth control or Lupron. I actually went on Disability because my pain is constant, daily pain radiating from my uterus (I have actual contractions as though I'm giving birth!) and also from my ovaries. I am now back at work in a different job because Endo isn't recognized as a Disability here yet, and I am not offered anything for the pain because I made the mistake of telling them that I tried pot once to get rid of the cramps! So I am now a drug seeking liar or something.

Endo seriously sucks!

Wow, you sure have been through a lot

Thanks for sharing your story, I hope for nothing but the best for you after all this pain.

 

[spiritbear]

I have endometriosis. I've always had very painful and heavy periods, I never realized it could be caused by something, I honestly thought it was "normal".

I was diagnosed after having laproscopic surgery in 2011. I had been trying to conceive for 1.5 years, and they did the surgery to see if they could find an explanation as to why i'm not conceiving. Turns out i had endo. Big bummer.

Anyway- I did concieve, and I have a beautiful 2.5 year old now.

I'm now trying for baby #2, I've been trying for 9 months. I'm hoping I'm not heading in the same direction as before.

(I hope I'm allowed to post in the LTTC section. I know i'm not at the LTTC point, but I find I relate to this section far more then the regular trying to conceive forum.)

Hi there, thank you for sharing your story- I appreciate it! I'm sorry to hear you have endo too, but I'm glad you were able to conceive the first time! Hopefully it won't be too much longer of a wait for #2 for you. What do you think helped the first time for you? I recently tried visceral manipulation where they break up any adhesions etc. and I'm really hoping that it makes a difference!!!

 

[Cherokeerose_]

I'm 23 ttc for 3 years and was diagnosed with endometriosis Oct 31, 2013. I had extremely painful periods since my cycles started and alway had a hunch it was endo after doing some research. Around August 2013 I started having horrible cramp like pains on my left side ( I always seemed to hurt on the left side) After a ton of Drs appointments they found a large cyst on my ovary. I was in so much pain nothing was keeping it even bearable. I had laparoscopic surgery to remove the 8cm cyst (endometrioma) on my left ovary and they discovered the endo and removed what they could but believed my left tube was blocked. My Dr also was unable to remove the cyst and just drained it. After a failed cycle on clomid november of 2014 and a new cyst starting to form my fertility Dr decided he wouldn't even treat me without doing surgery to remove the left ovary and tube. I've never been big on taking meds so luckily I keep my cramp pain at least mostly under control with children's tylenol or ibuprofen. No surgery yet since it's so expensive! My mom was also recently had her Dr tell her they she believes she has endo.

 

[PiggieFarmer]

Short-ish version: had terrible period pain since college, around 2001, with the max dosage of OTC pain medication making it barely tolerable. Had exploratory laparoscopy in 2013, which found endo. Had operative laparoscopy a few months later to clear endo and adhesions. Now I have basically no pain at all during my period. So the laparoscopy absolutely was the cure for me. Not the cure for infertility, but at least the pain is gone. Let me know if you want more info.

 

[FLArmyWife]

Finally more people with endo. I started a page looking for endo sufferers back in March and had no bites. Glad I'm no longer alone.

I got AF for the first time when I was 12. From age 12-15 I would have terrible cramps. So bad I stayed home from school/other things and would spend the day on the floor in the fetal position beside the toilet because I'd puke my guts out. When I was 15 I talked to my PCP and he prescribed BCP and said "it'll help" but never went any more into it. So at age 15 I went on BCP. It helped a lot. No more painful cramps, no more nausea, I could live a normal life.
Then in 2009, a few months before I met my husband, I was with a guy whom I had a history with, and we noticed I bled during . He asked if I was possibly getting my AF and I knew that was impossible due to being on BCP and knowing my cycles down to the hour by that point (after all I was 19 and had been on the pill 4 years at that point). I met my husband and he didn't want to until we were married. But we did other things. We noticed one night when staying at a friends house that he had blood on his fingers from me. We turned the lights on and there was lots of blood on the sheets. Embarrassingly I had to come up with an explanation for my friend and offered to do laundry to get the stains out.
We got married 01/03/2011. I noticed I again bled during sex so I finally talked to a gyno about it. He said he thought I might have endo and we schedule a laporoscopy. After the procedure he confirmed I did indeed have endo and it happened to be a case where it wasn't mild but wasn't like horrid. He explained he lazered it all off. I stayed on BCP because DH and I weren't TTCing . I staid on BCP until June 2012 when I decided I wanted to switch to Mirena. DON'T DO IT! The pain of the gyno putting it in was terrible! I actually passed out from pain on the table. And because of my endo I spent a YEAR in pain feeling like I had little army soldiers in my uterus poking me with knives. After a year I couldn't stand it anymore, went back to my old gyno, and he removed it. Instant relief! So I went back on BCP from June 2013-April 2014. At that point DH and I decided we were ready to start ttcing. We were NTNP from May-July 2014 and then started actively TTCing Aug 2014. After about 7 months of no luck we got our current gyno to do some fertility test. All my bloodwork came back good, and DH's SA came back good too. I am currently on my 3rd cycle of Clomid. I will say that I"m lucky I don't get any side effects with the clomid other than I can tell it's making my endo worse. After my laporoscopy things got a little more bearable. I didn't have pain during my AF, and didn't bleed during anymore but was still painful. I've noticed since starting the clomid that my terrible cramps and nausea during AF is back and I'm starting to have slight bleeding during again so I know the estrogen in the clomid is feeding the endo and making it worse. Because of this, this month will be my last cycle on clomid. If it doesn't happen this cycle then idk. We will be moving and getting to go back to our gyno who first diagnosed me with endo. Maybe he'll have some ideas.

Sorry I know that was a lot. I just wanted you to know you aren't alone. I have been suffering endo for 14 years this month.

 

[spiritbear]

Hi everyone, I had to chime in again when I saw more comments on this thread. So glad that there are more women out there that can support each other through endometriosis.

So, I think I had mentioned in the original post that I tried Visceral Manipulation for the first time. Insurance doesn't cover it so I put it off for a long time. He felt (with his hands) that I had endo tissue fusing my colon and uterus together and that my uterus was not positioned correctly. All things that could not show up during the routine testing at the fertility clinic. He was able to clear up the endo with just his hands and moved everything back in place. I went for a check up a week later and everything held. We were pregnant the next cycle (and it has stuck, God willing!! after 4 chemical pregnancies, I am actually 7.5 weeks pregnant now)

If you do not have Visceral Manipulation in your area, I believe it is similar to Mayan Abdominal massage or Clear Passage. Anyway, everyone's body is very different but it seems like I found something that addressed my specific problem so I wanted to just spread the word about it.

Wishing you all the best

 

[babyboop]

Hi Spiritbear! Thanks excellent news I also have endometriosis which has also fused my uterus and colon together and my uterus is also out of position. I wish I could access someone who does Visceral Manipulation where I live! Did you have just one massage? Was it painful?

Congratulations on your pregnancy and I wish for u a happy and healthy 9 months!

 

[spiritbear]

thank you so much, I wish you the best too!

I did one session and then one follow up a week later. I was supposed to go in a month after that for a follow up. It did not hurt at all, just felt a little weird- plus he had to get in this awkward position on top of me in order to do it haha.

Is there anyone in your area that does anything similar like mayan abdominal massage? You can also do castor oil packs daily before ovulation- that is supposed to break up the scar tissue as well.

best of luck to you!

 

[Steffilyn]

I have been struggling with endometriosis and PCOS for twenty years now. My OB told me I had it so bad that when she went in for a Laproscopic surgery all my organs were covered. She told me if I was not pregnant by thirty I would not have a child and I got pregnant with my son at 29. Over a year ago I was hospitalized with severe pain and complications and I agreed to the Lupron injections, 3 rounds. I just took extra calcium supplements to counteract the bone loss. Here I am today 36 and pregnant with number two! I wish you ladies luck and just know it is possible to have another baby with endo.

 

[Steffilyn]

I have been struggling with endometriosis and PCOS for twenty years now. My OB told me I had it so bad that when she went in for a Laproscopic surgery all my organs were covered. She told me if I was not pregnant by thirty I would not have a child and I got pregnant with my son at 29. Over a year ago I was hospitalized with severe pain and complications and I agreed to the Lupron injections, 3 rounds. I just took extra calcium supplements to counteract the bone loss. Here I am today 36 and pregnant with number two! I wish you ladies luck and just know it is possible to have another baby with endo.

 

[spiritbear]

congratulations!!

 

[Kris725]

Hi! I know this post is a little old now, but I had to comment because your situation sounds exactly like mine. I see you are pregnant though so congratulations!! I have always had intense pain during my periods and very heavy. I was also told I have endometriosis but no official diagnosis since I wasn't told to get the surgery. I have a very hard time conceiving usually takes me 12-13 months, and both pregnancies ended in early mc.
Now that you're pregnant do you have any advice to those like me who have endo and are trying to get pregnant? Or ways to manage the pain? I feel like doctors don't take me seriously because I'm still young and they say they won't worry until I have my third miscarriage. Therefore, anyone who can relate to me is nice to hear from.