I Have A Presumed Diagnosis Should I Get Laparoscopy Just To Confirm? | MyEndometriosisTeam

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I Have A Presumed Diagnosis Should I Get Laparoscopy Just To Confirm?
A MyEndometriosisTeam Member asked a question 💭

Hello I am new here and wanted to get some opinions on my situation.( I apologize for any gross details) I’ve had bad pain in my periods ever since I was 12 and was put on birth control at the age of 15 to try and help with pain and heavy bleeding. Was told at the age of 16 I have IBS. I’m now 26 and have been experiencing issues urinating and sharp pains I can’t explain in my pelvis that even radiates to my buttock sometimes. I will be walking and it will shoot down my leg and I can’t move for… read more

posted March 10, 2021
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A MyEndometriosisTeam Member

I would. Especially if you want to have a baby. I dealt with the pain for so long and my doctor always said it’s probably endometriosis and never confirmed. By the time I did, it was so severe and I was diagnosed with infertility. I was not a candidate for IVF because I also had a severely low egg count and the eggs I had were very poor quality. I couldn’t even use a donor egg because there was so much endometriosis inside my uterus. I’m 41 and just had a hyst a month ago. My bladder was adhered to my uterus and very difficult to separate. My bowels also had endometriosis and I was having pain with going to the bathroom. For sure, if you want kids, I’d want to know now while you are young!!!! There are options to help the endo until you’re ready to have kids if you choose that path such as an IUD. I wish you the best!

posted December 24, 2022
A MyEndometriosisTeam Member

Hi there, I am sorry to hear you have had to go through so much! Has your doctor mentioned whether an MRI with contrast might help reveal what's going on? They can also do contrast to see if any other organs are affected, like the colon. I was also diagnosed with IBS, but it may all be due to endo. Since endo is microscopic, it's not always viewable on ultrasound unless it gets to be an endometrioma (I have a large one, and it showed up on a pelvic and transvaginal ultrasound -- don't know if they did both kinds of pelvic ultrasounds on you, but that could help too). The MRI also helped see the positions of the organs and the cyst more clearly. Also, if you are concerned about becoming a mom, would your doctor be able to harvest some eggs for egg freezing when she does the laparoscopy, or before? Doctors can also feel nodules sometimes during a pelvic exam. Just sharing some ideas, I hope they help. Big hugs!😍

posted October 30, 2022
A MyEndometriosisTeam Member

Nothing really showed up on ultrasounds unfortunately. I think it is very hard to detect without laproscopic intervention. I felt so relieved when i knew it wasnt all in my head. It just makes me so angry that it took a locum to refer me for laporoscopy. No other gp had ever mentioned endometriosis to me. And yes my son was my light at the end of the tunnel. We did try for another for 8 years but with no luck but considering my prognosis i feel blessed to have one child. The thing is that if you are diagnosed, depending on the area you live in you will be offered up to 3 attempts of IVF on the nhs if you cannot conceive so there is always hope. Never despair. I really hope you get some answers. People who do not have this awful condition rarely understand the impact it has on your life. Sending you hugs.xx

posted March 19, 2021
A MyEndometriosisTeam Member

@A MyEndometriosisTeam Member
Thank you so much for the answer and for sharing that with me. It makes me happy to hear you had children that’s one of my biggest fears.
If you don’t mind my asking, when you had ultrasounds could they see anything? I think that’s why my doctor doesn’t want me to do surgery.

posted March 14, 2021
A MyEndometriosisTeam Member

Laparoscopy is the only way to get a true diagnosis. Since my periods started i suffered and went back and forth to a gp. At the age of 23 i was diagnosed after laparoscopy with endo. Unfortunately my endo was so bad that various organs were stuck together,my ovary was fused to my pelvis and i was told i would not be able to have children. I underwent ablation, took danazol, had prostap injections and had a fallopian tube removed and heavily medicate to manage my symptoms now. Do not wait until you decide to have children as you may need treatment to stop your fertility decreasing if it is endo. The story does have a happy outcome though. I am now 43 have a 10 year old son and am hoping to have a hysterectomy in the next few years. Endo affects my life every day. My mother always remembers extreme pelvic pain and painful periods throughout her life. She had been diagnosed with endo but nobody had told her. She only found out when she was diagnosed with endometrial cancer. Had she been given her diagnosis of endo all those years ago she may have pushed harder for my diagnosis. Push for laparoscopy soon so you know what you are dealing with. Best of luck.x

posted March 11, 2021

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