Back again feeling really defeated and like im going crazy. I think there may be some discrepancies here, please let me know if anyone has had any similar results or reason for hope after being told I have hit the end of the road.
To start, I’ve had textbook endo symptoms since 14. It also runs in my family.
I had a negative laparoscopy in June by a gyno. He only did incisions on my left side… said nothing was found except for dilated veins (PVCS) on the right side… and referred me for a pelvic MRI with contrast. Today I had a horrible follow up appointment with the MRI results. He said to me “there’s nothing causing your pain. We have left no stone unturned. You could try getting pregnant.” (I had a miscarriage in May. Am not ready to go through anything like that again; I now have mirena coil.)
After sobbing for a while, I read my MRI report. I have fluid in Pouch of Douglas, and layering T2 dark material on a cyst. Essentially a chocolate cyst.
In your experience would any doctor consider these findings worth a second opinion? Maybe a specialist would care more? Has anyone else here kept pushing with so little to go on and found it to be worth it?
I can’t be imagining these symptoms. The pain can be debilitating. The mirena coil has helped, but I regularly have pain that causes vomiting and dizziness, inability to walk or even talk. I know most of you can completely relate. I’m just so tired.
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No it doesn’t. I understand it may not be. It’s just a pretty textbook description and I know exactly what they’re talking about because it’s one of my oldest and most intense spots with such localized pain. Gotten worse and worse over the years.
You haven’t reached the end of the road at all. A chocolate cyst is often Endo. How much experience did Gynae have with Endo? We’re they actually a consultant or registrar?
Can you afford a private consultation with an expert? Christmas pressie maybe? They can look at your MRI and go through symptoms etc. I know we shouldn’t have to but if you do find one that does NHS as well as they can transfer you if they chose. Or go back to GP that you want a second opinion, it’s not a guarantee but I’ve not been turned down yet and switched to other hospitals for Gynae and gastro.
Not a specialist at all. I am currently in Canada (moved here from the states) and I was so grateful for any opportunity to get checked out at all since it was not an option for me in the states. The system here is different from the UK but i think there may be similar options…
If you can get checked by a specialist, you can request a copy of your previous hospital records if new Gynae can’t access them.
Don’t feel embarrassed about getting another view point, this is your life not the previous Gynae and unfortunately we have to advocate for ourselves when given the brush off.
We don’t know the MRI hasn’t found a chocolate cyst, it’ll depend on the expertise of the person writing the report. As the Gynae isn’t an expert on Endo who knows what they missed if they looked at the pictures which they probably didn’t.
Thank you so much for understanding. I don’t think he looked at the images. All he said was “the veins are fine.” Because it said so on the report. I had to remind him of the dilated veins he found during the laparoscopy. I even had to tell him which patient i was when he walked into the room and he shuffled through paperwork to find me. He didn’t answer my follow up questions.
Your validation means the world. I am no doctor and I understand I can’t diagnose. But something is wrong and i really felt like being told “we’ve done everything there is to be done” is incorrect when there are some things that may be worth looking into.
Reports of MRI scans are written by radiologists and radiologists advise the technicians what protocol to apply depending on what is being looked for. The post confirms that the gynae looked at the MRI results and the poster read it too so the expertise (or lack) of the gynae is irrelavent.
The main point was that a chocolate cyst is always an endometrioma, not 'often'.
Gynae might just have looked at the report not the pictures. I’ve had surgeons just look at the report and some specify they’ve looked at the pictures, there is no consistency.
It isn’t for the gynae to look at the pictures - they aren’t radiologists. We do have some who look at the pictures and disagree with the radiologists and dismiss the findings only for another radiologist to confirm the original expert findings. Whether there may be an agenda to this sometimes who can say but really it is best that the experts stick with their area of expertise to ovoid the inconsistency. We have such a case at the moment- an MRI shows RV fibrosis but the MDT has discussed it and dismissed it and referred what is a clear severe case to general gynae. It’s frightening.
I hope who has had the MDT dismiss theirs gets a second opinion from a different surgeon. This will happen as much as possible to reduce their lists and make them look better. Have to hope that GPs have more common sense (🤞) to help women get the right help for a change.
You are always entitled to a second opinion!! You have to be your own advocate these days it’s awful doctors just fob us off and leave us to suffer but you are 100% entitled to a second opinion and if they don’t let you then say you will take your case to PALS and they will certainly jump if you say that. Was your initial things done by an endometriosis specialist? If not do your research and find the name of the endo specialist at your local hospital and tell your gp that you want to be referred to that specific person as that will help a lot xx massive hugs and good luck any questions just let me know and let me know how you get on xx
I haven’t seen an endo specialist. The surgery was done by a gynecologist. I have kind of mixed feelings about him. The surgery was extremely short and my incisions were all located on the left side.
I am in Canada. There are 3 specialists in my city.
I feel ashamed to even go back to my GP and ask for a referral after these results from the gyno…
DO NOT feel ashamed!! This happens to lots of women honestly you are not alone please speak to your doctor and explain that you are want to see an endo specialist please do this you need to. You are not alone so speak up and you will get heard and get the help xx
hi hun push hun get a second opinion as others said you are entitled to it. I often get frequent nausea and dizzyness all the time now . I thought I was going crazy 🤪 have had symptoms since 10 years old as they weren’t right when I started . I kept having pain and they said the pain was unexplainable so had lap and have severe deep infiltrated endo and frozen pelvis organs with bowel envolvement . Hun you aren’t crazy at all get a second opinion you are entitled to that don’t settle for second best get the opinion you need. Seek am endo specialist as they are more likely to see things others can’t as they can have more experience and insight where normal gynecologists don’t . As they have specialised in endo . Being told to have children is not on that’s his opinion not yours you do what is right for you. You are the one In pain not him . I do find some males especially some doctors are not sympathetic at all some females also not as well. But you would think a female should be understanding . Take your partner to appointments or someone you trust that way they can’t fob you off as you have someone that can back you up . And also hear what the doctor is saying. Report this guy to pals or something or at least make a complaint why I say this is so other women don’t suffer like you have. Take care x
Hello, sorry to hear about your rough time and there has to be a reason for your pain etc, have you had an MRI to check for adenomyosis?
If you can afford to, I would have a private consultation with a specialist gynaecologist at your local private hospital, just to let you know a rough price mine was £200 (I could then be put onto NHS list for scans or operations), plus you also get to choose which Consutlant you see.
I have both adeno and endo and have lots of chocolate cysts, pain and bleeding.
i haven’t had any sort of test for adenomyosis specifically. He didn’t take any tissue samples and only looked “around” the outside of the uterus during the surgery. It was a pretty obvious change in his interest in me after finding out i was capable of getting pregnant. (I was on the waitlist for a while, miscarried at 11 weeks exactly one month before they scheduled the surgery).Half of the things he said he would look at he said didn’t matter anymore.
Do you have a copy of the operation report? Does it say where he’s checked and how during the lap? I would definitely get a second opinion from a specialist in endo. My general USS showed nothing and my MRI (not done at specialist centre, no prep/contrast) found only small area adenomyosis, no Endo. But on lap with Nancy Nook/BSGE specialist I had Endo including rectum.
I was never given anything except maybe 5 minutes (at the most) with my gyno after the surgery and after the MRI. I do have a copy of the MRI report. I think it’s time to try pursuing a specialist. Thank you.
lf there is the slightest chance your pain could be caused by the cyst. I would ask for a second opinion and if there is even a CHANCE this could be so why are they not surgically removing that cyst.
Wishing you well on your journey through this, Alexa
Thank you for this. I don’t think the cysts are the answer to all of the problems but I definitely think at least the right one is causing me pain. You make such a good point, if it might help to take them out, then why not? I would take any chance for a bit of relief. Thank you.
This sounds exactly like what happened to me in October I really struggled getting anything out of them regarding my MRI, I was told on my pre-op appointment there were cysts on both ovaries but now apparently there was nothing like in the lap! Like you, I only had a left side incision and I have text book endo symptoms (family history too)! I'm so sorry, I really know how you're feeling right now. Also, my surgeon did not even come to speak to me post surgery so I don't even know what they looked at or didn't! Sending so many hugs to you!
I've been referred to gastro after begging for someone to take my severe pain seriously but even the consultant doesn't think it's gastro related but will do the tests anyway. I'm planning on paying to see a specialist for endo though in the new year, because it's ridiculous that this condition is so hard to diagnose! I would recommend getting a second opinion, definitely! If you ever need to chat, I'm always here
Oh my goodness. I am SO sorry you are also in this situation, but I do feel really happy to meet someone who understands this. We aren’t alone; the support on this forum is incredible, but the limbo is definitely a frustrating place to be. So confused, angry, sad, kind of crazy feeling!
Not sure what to make of this, but a vascular interventional radiologist office called me for a consult in February following the MRI results. I don’t know what they’ll tell me but it feels good that at least one professional actually viewed the images and wants to follow up in some way.
After my pregnancy I had new pain on top of the suspected endo symptoms/pain that i’ve had for over a decade. Not sure how to describe it, but more localized, 2 specific spots on each side. One lower in the pelvic region and one almost directly above them more on the level of my belly button. Not worse pain exactly, just a completely different sensation from what i’d been dealing with before. Has anyone experienced anything like this?
When my gyno suspected PVCS, this made sense to me as being caused by my pregnancy, due to the timeline. Vascular and connective tissue problems have been a part of my life forever and also run in the family. they don’t usually cause any major issues, but developing PVCS made total sense to me.
I know you all understand this but I also feel the need to say, I do not WANT to have endo or PVCS. I do NEED answers to very real symptoms that are affecting my life. Thank you all so much for validating me, that something is wrong and someone should be able to give me answers. You are all incredible and I’m amazed by everyone’s stories and strength.
hi , I went through bad pelvic pain for about 8 years. My Gynae did a laparoscopy and diagnosed varicosed ovarian veins. I was put on an nhs for have an ovarian vein embolisation. During the 2 year wait, I deteriorated. By the time I had the procedure it was quite extensive. The whole thing should have taken about 45 mins max, mine was 2 hours. They didn’t quite get all the veins so I continued to have problems , which ended up with me passing out in pain everytime I went in a car, I then got booked in for a second round of treatment, where it was totally successful.
It is minimally invasive and better than having a hysterectomy, which was the other option the hospital recommended given , as I kept crashing in and out of the place in agony before the second op. I would welcome the referral, hopefully they can help you too.
You arw definitely not imagining your symptoms. Suggesting that you get pregnant in order to 'fix' thus is awful & wrong. I would most definitely seek a second opinion. It may be that your gynae is not experienced enough in Endo to recognise it. There is a list of specialists on Nancy's Nook on FB. Good Luck & keep at it Xx
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