Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi everyone. My name is Davina and I am going through a lot with my endometriosis diagnosis and could use some friends. In the spring of 2013 I was diagnosed with endometriosis at the age of 17. I was having a lot of stomach pain and didn't know what was wrong. I had a large ovarian cyst that they thought was suffocating my ovary. When they did a laperscopic procedure they found bits of endometriosis in my pelvis. Over a 2 year time period, I have four cysts removed from my left ovary. I had endometriosis ablasion, nerves cut in my pelvis, and a twisted ovary. Every time a surgery was done I was told, you'll feel soooo much better. For a few weeks I would feel better, then back to pelvic pain. This past year I've been going for ultra sounds every few months and each month they tell me they can't see my ovary because my bowel seems to be wrapped around it. They didn't want to do anything to me with how many stomach surgeries I have had over the years. My pain started getting worse, and I lost control of being able to go to the bathroom. (I didn't go for 21 days and got insanely sick). I had a colonscopy, and they said that I seem to have no reaction to when stool is in my rectum. I thought this is odd. My last menstral cycle I bled through a tampon every 30 minutes, and doubled up with a pad bleeding through that in an hour. I was referred to a new gyno who told me my left ovary looks enlarged. He wants to do endo ablasion, and possibly remove my ovary. He is concerned there is an endometrioma growing from the inside. He says not to worry because my right ovary is good, but I'm depressed because I am only 21. How do you all cope with this? Who do you talk to? I go to physical therapy and regular therapy but I just need a friend who understands what I'm going through. I'm looking for all the advice and support I can get. Thank you all, and keep fighting.
tl;dr I'm close to your age, and I know what it's like to be frustrated, so if you're looking for someone to vent to, I may be your person.
I can't even put into words how sorry I am for what you're both going through at such a young age.
I am a 41 year old with stage 4 endo that has spread throughout my bladder, colon and rectum. I have also struggled with ovarian cysts for years. For 14 years I was misdiagnosed and was left to feel like I was losing my mind. When I read about your anal spasms I literally started to cry because I know exactly how you feel. Having a bowel movement is so painful I actually ripped off the toilet paper holder because I have to brace myself.
I am scheduled to have a total hysterectomy, colon and rectal resection and partial bladder removal in February. The doctors swear that I will be a different person after this surgery but it's so hard for me to believe that. I am not writing this for pity, I could just use some support as well.
I feel as though I am a shell of my former self right now as the pain is unrelenting, morninf, noon and night. I am lucky enough to have 2 biological children and 3 stepchildren but life is so busy and chaotic it's hard to get through each day at this point.
I hope and pray that you ladies will find the right doctor that will help you and make it so that you can enjoy your young lives without constant pain and bleeding. Are you seeing colorectal physicians? Urologists? Pain specialists?
Some doctors are so clueless when it comes to our diagnosis. I was recently hospitalized at Mass General in Boston, one of the most world renowned facilities in the country. I was admitted to the medicine service and was under the care of the most condescending, chauvinistic, misinformed doctors that I have ever come into contact with. He wrote in my discharge summary that he didn't understand how endo could be so painful and insinuated that I just wanted pain medication. My PCP showed me the report during my follow up and she cried right along with me in sheer frustration. I guess he didn't understand how passing. Blood clots through my urethra and passing stool through my vagina could hurt. Is he serious? I never felt so humiliated and misunderstood in all my years. I share this with you in the hopes that you can advocate for yourselves and never let a doctor tell you that your pain isn't real and isn't debilitating.
Please let me know how you ladies are doing in your fight. We need forums like this to validate one another and help each other through these tough times.
Much love,
Amy
I found a pain management Dr. that has completely changed my life. He gets it!! Based on my lap and where my lesions are, he told me a nerve block would ease the pain, pain that is so bad during a BM that I have projectile vomiting... Long story short, he was right. After getting radio ablation of my hypogastric plexus my pain is down to a 2 from 7. Nothing else worked!
Surgery is not always the best option. More surgery means more scar tissue, which means more adhesions. Plus, even with a very skilled surgeon, there will be lesions to small to see or in a place to dangerous to remove. Considering there is no correlation between amount of pain and number of lesions, surgery might not improve your pain at all.