Hello. I have always assumed I have endo (painful and heavy periods, debilitated each month, PMDD, fatigue and my mum has it). My question is, is it worth getting a diagnosis? As I understand, there is almost no point in scans, as it is missed more often than not, so that would mean straight to laparoscopy. What was your reasoning for going to surgery? Is it simply the receipt of a formal diagnosis and the peace of mind that you know what is wrong with you? Has anyone experienced a real-world benefit e.g., opened doors to better pain management / medical support? Would anyone recommend skipping all of the scans and just going straight to surgery? I had a pelvic US today, they did not want to bother with the TVS as they "got everything they needed". I was not fussed having read that 85% of scans miss the endo anyway... Really welcome any thoughts or experiences!
Is it worth it?: Hello. I have always... - Endometriosis UK
Is it worth it?
Everyone is different I have to say, but my journey to diagnosis started with an ultrasound that caught what we though was a cyst. This was after my complaint of immense pain. From there to laparoscopy to remove the cyst. Once in there he found severe endo. He drained the endometrioma which did help a lot with the pain, but wasn't able to do much more as we hadn't agreed to more than cust removal. I was then put on prostap. This and the cust drainage together has left me with only minimal twinges and a 'normal life'
I had an MRI after the op which a specialist radiographer looked at. They discovered another endometrioma and adhesions in places they decided it was important to remove. Near bowel and ureter. Also hydrosalpinx in one fallopian tube. Due to my age I've decided to have a hysterectomy along with the excision. This is happening on the 28th this month. This is not a cure and symptoms can return, but I am hopeful as the prostap worked so well. Sorry to waffle, but hope this info helps.
Hello and thank you very much for sharing your experience! It sounds like there were some actions they could do as a result of the diagnosis to help with your pain, even if temporarily. Wishing you the best of luck for your hysterectomy on the 28th 🤞
Hi! Mine was found 26 years ago. My husband and I were trying for a baby and it wasn't happening, so they wanted to have a look inside to see if they could find out why I wasn't conceiving. And there it was! Endo! I did have painful heavy periods at the time, so at least they found the problem and could resolve it, or so I thought! Fast forward 26 years and I'm now on gnrh analogues to put me into chemical menopause with hrt add back. The choices for women are no better than they were 26 years ago, a lot of medical professionals are still clueless as to endometriosis. The waiting lists to see a specialist are through the roof. The only way to properly diagnose endo is with a laparoscopy. And then they try to remove as much as they can and it seems progesterone is the only thing offered to slow the growth as it will come back! Diet seems to help relieve symptoms in some, most need painkillers, and you need to have tried everything before a hysterectomy is offered. It's just not good enough! Yes it is worth the diagnosis because they remove endo to try and stop it growing too much into other internal organs, but we have to do something to slow the growth, and that often comes with medication side effects. Rock and a hard place come to mind. I wish you well and hope you find your path. But I would say it is definitely worth finding out if you have it xxx
Thank you so much for sharing what you have been though. Rock and a hard place is absolutely how it feels! Really welcome your reflection that you still feel it's worth getting a diagnosis. Thank you 🙏 xxx
Mine was picked up on a private internal ultrasound and they got a lot of detail. This was then followed up by an NHS MRI which showed the full extent of my endo and that it was stage 4 with large endometriomas and bowel involvement that required surgery. This gave me all the information so I could consider the best options for me. You need to get yourself good imaging to begin with. It doesn't always show but imagery is getting better and better and a lot of people do have it diagnosed this way. However, it makes no sense that you weren't offered an internal scan. It would need that as a minimum so I would suggest seeing someone else. Good luck x
Hi and thank you for your reply. It definitely sounds like it worth be pushing further in terms of imaging and getting the TVS, or perhaps straight to an MRI. It's been reassuring to hear from people who did get useful results from imaging. Thank you x
Hi Luna, you may benefit from chatting to one of our endometriosis nurse specialists on our nurse-led helpline! You can book in a call with them here: endometriosis-uk.org/nurse-...
For me, I wanted to know what was wrong and get a concrete diagnosis, as I felt like my symptoms were being dismissed and played down by medical professionals and at times I felt that I was going mad. I just had my third laparoscopy (first by endo specialists) a few weeks ago and they have confirmed that I don't have endometriosis. I was previously told that they had diagnosed this by a ultrasound scan on a new machine that was able to pick up images better than most ultrasounds.
During the last surgery they cleared my blocked tubes and were able to confirm that the issues I was having with my bladder and bowels were because of a large fibroid sitting on my organs. I have had multiple scans (MRIS and ultrasounds and were told about my fibroids but no one was able to confirm the impact it was having for my other organs). I feel more reassured now and understand what is happening when I am feeling pain. I also know that I don't have endometriosis and will not be doing any further surgeries to check for it. I am generally feeling better and healthier than I was before.
I just came here to say, you know your body best and your mind - so if it is not something that you feel that you need to do, then don't. It wasn't easy recovering from any of the laparoscopies as I generally get post op infections and it takes a long time for me to heal abut I am glad that they could rule out endometriosis for me. My symptoms were pelvic pain, excruciating period pains, nausea, vomiting during monthly cycles, problems with bowels and constant UTI's. I got a lot of support without a diagnosis (pain management, referral to physiotherapy, pain meds etc) but I am not sure if this happens across the board OR if I was just lucky.
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