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Endometriosis

Aug 26, 2015 3:30 PM

Hi I'm new here. After 2 years of procedures I have been diagnosed with endometriosis. Today I was given the mirena iud to see if this will help with the endo pain. We shall see.....

Aug 27, 2015 1:39 PM

Blimey 2 years! I have arthritis and I'm currently under investigation for this...just had an ultrasound hope it doesn't take this long to get a result hopefully things are working better for you now you have reached somewhat of a conclusion

Aug 27, 2015 5:01 PM

Endogirl, I have had endometriosis my entire life, I feel your pain and frustrations.

Multiple surgeries, hormone treatment etc. Knowledge is power. Learn all you can.

Aug 28, 2015 2:43 AM

I have endo aswell I am currently on ora morph and paracetamol to cope with my pain but now my consultant has put me on zoladex injections for 6 months to see if that helps with my pain as it should turn everything of temperily they said and if that works then it is endo and they are willing to give me a hysterectomy to help !im currently 30 with two children ! I hope your getting the help etc you need aswell !!

Aug 28, 2015 5:17 AM

I've had endometriosis forever, I managed to have 2 children (very prem though) before having a radical hysterectomy in 2001. Now 14 years later it's back! I'm on morphine Mst and lots more. I'm sorry you (we) all are going through this pain. X

Aug 28, 2015 6:20 AM

Rebeve, I'm curious where your pain is post hysterectomy? I've also had a hyst and wonder if the abdominal pain I'm having could be related Did they also take your ovaries?

Aug 31, 2015 8:30 AM

I had the mirena coil put in a year ago due to endo and adenomyosis. It's the best thing I ever did. I haven't had a period since! The relief is immense. I hope you experience the same success.

Aug 31, 2015 10:26 AM

I have to ask a question that is going to sound really stupid to those of you suffering with endometriosis. What does the IUD do that helps or is supposed to help with the pain and the disease itself?? I'm 50 and going through menopause and wish that it would just be done already. I pray that the treatment helps you feel better and relieves your pain. 🙏🏻🌻

Aug 31, 2015 10:29 AM

Rainbowroo, thank you. That is the best thing I have heard all week. Still waiting for a diagnosis(suspecting endo at this point). Going to ask doc about doing iud on the 18th. Thank you for that little bit of hope.

Aug 31, 2015 10:46 AM

I've had endometreosis cleaned out twice, during surgeries to remove my ovaries and later a paraovarian cyst. They took my uterus in 1995, ovaries in 2003, and the cyst in 2010. So far, I've not had anymore related issues. But maybe I can't feel it due to all the other pelvic floor and abdominal pain. Hugs and prayers for all of you! 🙏🌼

Sep 11, 2015 7:00 PM

Hi Chocolat , my pain is abdominal, but also around my kidney region and going into my groin.
I had my ovaries, womb, tubes everything removed in 2001. In 2013 the gyne oncology Removed a large benign abdominal tumour it was attached from my bladder to my liver. I thought that was the end of the pain but my body is thinking differently. X

Sep 11, 2015 8:54 PM

Omg Rebeve! Do you know what type tumor it was? I had a partial hysterectomy in 1995, & bilateral oophorectomy in 2003. In 2010, 2 years after all kinds of abdominal and pelvic issues and complaints, they removed a 10 cm paraovarian cyst from my pelvis. It was adhered to every single organ. And like you I'm still having problems. Maybe someday the docs will find a way to stop adhesions. 🙏🌼

Sep 11, 2015 10:51 PM

For those who have had a historectomy (sp?) Was it worth it? I have read a lot sayin that meds and hormones don't do much and the only long term solution is surgery. Thoughts? I have adenomyosis and chronic pain.

Sep 12, 2015 11:52 AM

I'd have to say no, my hysterectomy was not worth it. I've had too many complications directly related to it for 20 years, requiring additional surgeries. My uterus being removed allowed prolapse of everything else. If I could rewind the clock I'd have told my doctor no, and dealt with the menorrhagia & endometreosis & anemia. 🙏🌼

Sep 12, 2015 1:34 PM

My Mirena helped me for a while, but I just had a huge flare and had to get a Lupron shot to calm things including an ovarian cyst down. Previous to getting my Mirena I had done Lupron therapy for as long as safely possible. Then switched to Depo Provera, then Mirena. I also take topiramate for nerve pain and did pelvic pain physical therapy. I'm already feeling better from the endo flare and the shot was just a week ago. My remaining pelvic pain issues and flaring is due to Interstitial cystitis and I see urology on Monday to get back into treatments for that after being in remission for almost 2 years.

Sep 12, 2015 2:18 PM

I had a partial hysterectomy done about 4 years ago now I think ... the pain was so bad and it was making my life absolutely miserable on top of the RA and fibro i could barely walk ...they removed my uterus and cervix but they left my ovaries so I don't have to take any hormones or anything. No more worrying about cervical cancer which runs in my family and had a scare about in the past.

For me it was absolutely the best decision I ever made .. i had a wonderful surgeon and I haven't had any pain related to that since...no more "girl days" from hell .. no more crazy moodiness/pain for 3 weeks a month.

It also assisted in determining what was causing my lower back pain (SI joint inflammation due to RA) because that was no longer an excuse for the docs or me to think it was because of that.

Sep 12, 2015 2:23 PM

Birdsmith I had endometriosis all my life, it got better after my daughter was born in 85, when my son was born in 86 it got bad again. I suffered with it and ovarian cyst frequently finely in 97 I had a D/C,98 I had s D/C and Thermal Oblasion, 99 Complete Historectomy. The best thing I ever had done. I have had no problems. I was probably headed for cervical cancer because I had Chronic Cervicitus, as well as 2 different types of cyst on each overy. I hope you fell better soon. Will keep you in my prayers.

Sep 16, 2015 1:29 PM

Thank you weezie, meeting with my gynocologist tomorrow and gathering a list of questions I'd like to ask her. I am so grateful I have a team of quality doctors coming together to try and help me. I suspect if I don't have a hysterectomy I may be looking at cancer too having both genetic and diagnostic risks. Keep me in your thoughts. I just hope for positive resolution.

Sep 18, 2015 10:09 AM

Bird smith, got a diagnosis myself this morning. This has been extremely emotional for me.

Sep 19, 2015 10:13 PM

I had endometriosis and adenomyosis very bad, I had a complete hysterectomy done in 2007 and have had no problems at all, as far as that goes anyway.

Sep 25, 2016 6:44 AM

Poor girls. :(

Sep 25, 2016 6:46 AM

I've had endo for 4 years and it was finally diagnosed last year. People just kept telling me that my pain was normal and that I was just overreacting to cramps....boy were they wrong. I'd love to have cramps instead of this. I miss farming.

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