I think I have Endo, by nothing on MRI; can someone help?

[Forest_Green]

It started with my periods getting increasingly worse over a few months, before they became unbearable.

Unbearable pelvic pain, including contractions, blood clots and lots of fibrous bits of tissue, and extreme bloating and fatigue. The pain radiated into my lower back, hips and down my legs. Some days I couldn’t move. I ended up in A&E twice. (They did minimal tests and found nothing both times.) I’ve never known pain like it.

I went to my GP who checked bloods and swabs: normal.

Then I had an internal ultrasound (was in immense pain afterwards!) and it came back with ‘dilated veins to the ovaries.’

The GP said it looks like I’ve got Pelvic Congestion Syndrome (PCS) and suspected endometriosis is the underlying cause. (I’m in my late twenties, I was very active & fit before this pain - yoga and lots of walking - and eat a healthy & balanced diet , etc.)

She put me on the mini pill and referred me to a gynaecologist. However, he has done another internal ultrasound and I’ve had more bloods, plus an MRI (with & without contrast) and all are inconclusive. Nothing is cropping up and I’m still in constant pain!

One mini pill a day didn’t stop my periods or reduce my pain and other symptoms.

He put me on two pills a day, which has now stopped my periods and I no longer have the pain associated with it.

However, since my last bleed (July), a pain located somewhere deep in my left hip/groin area has been persistent. It goes into my lower back, down my left leg and into my foot; sometimes it’s a dull ache, sometimes it’s a sharp pain. It moves, too…

Some days it hurts more in my upper outer thigh, sometimes more in my upper inner thigh. Or even my foot. I get pain throbbing through the left of my privates, too, deep inside there.

I have occasional tingling and numbness in my leg/foot, my left leg feels heavy, and my skin from the waist down on my left side is very sensitive to touch (even my clothes moving against my skin is irritating). I know this means there is nerve involvement.

Additionally, I get relief from the leg pain when lying down usually. But my groin/hip area can still throb.

My pain is always there, but it peaks and troughs. Movement and standing makes the pain worse.

Can anyone give me some idea what this might be? Does this sound like Endo? Has anyone had these symptoms?

Additionally, I get dizzy quite a lot.

I also have frequent and urgent urination (most times I have to sit and wait for my bladder to empty fully, too) and I get awful ‘lightning’ pains shoot through my rectum; generally before a bowel movement.

I get a random & sudden burning, stabbing, pulling feeling shoot through me anywhere in my abdomen/pelvis on either side. These have been less frequent since being on two pills, but still happen. Very quick but awful pain. They usually feel like an electric ‘singe’ ripping through me.

Anyone else out there relate to this? Do you think it might be Endo?

(Gynae has reluctantly ‘provisionally’ put me on the year-long wait list for a laparoscopy and wants me to see a Neurologist in the meantime.)

[Moon_maiden]

Hi

Sorry you are going through all the pain, that will be very real unfortunately. A lot of your experiences could be Endo, nothing ever shows in bloods, did they do tests for autoimmune as well? I’ve had hardly anything show on any scan and had Endo, fibroids (three showed, but loads more) adhesions all there. Endo can effect the nerves, try looking up pain management endometriosis and hopefully an article will come up.

Sounds like you have a good GP, seeing a neurologist isn’t a bad idea. Your GP can contact the Gynae if you aren’t coping and see if they can speed op up, if that’s what you want.

I completely understand the pain being there all the time and it fluctuates depending on what you do. Have you got pain management on top of the hormone meds?

Since mine got worse I’ve also had gallbladder out as well as hysterectomy a few years ago, I’m 56.

[Forest_Green in reply to Moon_maiden]

Hello,

Thanks so much for your reply 💛

Yes, I’ve had many blood tests for things like that now and just had one to check my bones, of all things, which will come back tomorrow/Tuesday.

My GP has put me on a low dose of Amitriptyline to see if that helps with the nerve pain for now; she will be doing a physical exam on Tuesday, plus look at blood results, and then put referrals (whichever seems the most necessary, as she doesn’t know if I need neurologist or musculoskeletal, or both) through from there.

I’ve expressed my desperation to my GP and asked if there’s any way of getting the lap sooner and she says there isn’t. I just have to keep ringing to try for a cancellation.

It really helps to know how other people experience Endo and guide me on whether what I have is possibly Endo or not.

It seems like it’s still a possibility. I just can’t believe the wait.

I’m hoping I don’t have a gynae issue, because I can’t believe the amount of dismissal, gaslighting and waiting just for a diagnosis women are put through.

I’ve been told “it’s probably just a blip period” to “it’s stress” or “maybe you’ve had a bad virus”. Which I can’t believe seeing as I can barely walk from the pain! It all started with severe periods and now I’m getting my bones tested. I mean, I’ll do whatever they want if it means I can get an answer and my life back.

It’s so frustrating to have been through months of testing with a gynae to now have to go back to my GP for another referral.

So sorry to hear what you’ve been through. Thank you for taking the time to relay your experience, it means a lot and you don’t know how much it helps. 💛

[Moon_maiden in reply to Forest_Green]

🤞 the Amitriptyline works, I’ve tried it, I find Duloxitine works slightly better.

It’s definitely worth pursuing the Endo route especially when you’ve had bad periods and get symptoms. I’ve no idea why drs take so long to move this forward. My GP sent a letter requesting a more urgent op, they can do it, still depends on how much the consultant takes notice. Definitely keep trying for cancellations, the appointments team suggested I do pre op so am ready at short notice, that helped. Does your Gynae know about Endo? They should at the very least have an interest in it. Sorry if I’ve said that already.

Please ask anything, I had bad periods all my life but ignored things until a few years ago.

[Tangoandmax]

Hi, sounds an awful lot like endometriosis to me. MRI can pick up endo but it can also be missed. I was provisionally diagnosed with Endo/Adeno from an MRI but it was clear adhesions had stuck organs together.

Lap would be for the best (I’d avoid having one with a general gyne though if you can make sure the surgeon is a specialist or at the very least has a special interest) however, I’d suggest checking if the individual who reported on your MRI has a specialism in Endo. I’ve had so many scans, they were all a waste of time due to untrained/uneducated individuals reporting on findings.

It sounds like you’re really struggling, I’m sorry. It is terrible the state they leave us in whilst sat on wait list after wait list. X

[RosieFalkor]

You have very similar symptoms to me. My laparoscopy diagnosed severe Endo on my bladder, rectum, abdominal wall and diaphragm. None of this was visible on my specialist MRI (although they could see Endometiomas).

You need to be prepared that if they find significant Endo they may not touch any of it and refer you on to a BSGE centre. This is what happened to me, I was put on another waiting list and have now been waiting a year for my excision and hysterectomy.

[Kaita16]

An MRI will only tend to show deep infiltrating endometriosis - I had one which showed a lot but that’s quite rare tbh. Not showing on an MRI or ultrasound means that you can absolutely still have it, this is why a laparoscopy is the one definitive diagnosis method

[LME5]

I'm sorry to read of your pain. Your symptoms have been associated with the presence of endo - abdominal pain, back pain, hip and leg pain, as well as frequent urination and rectum pain. Endo has been found on pretty much every part of the body. Bladder, rectum and nerves in the pelvic area are common.

With endo there are surgeries to diagnose and surgeries to treat. Firstly, you're better off being referred to an endo specialist as opposed to general gynae. Secondly, if you're going to have surgery and you want to make sure it's to treat you and not just diagnose you, then it has to be excision surgery with an endo specialist. Otherwise what will typically happen with a general gynae is that you wait a year + for your surgery, they might see endo and they might not (depends on their training and experience) and they probably won't have the expertise to treat you. Especially if you have rectal endo which requires a colorectal specialist be at your surgery.

Please don't rush into surgery with just any doctor. Look into endo specialists, speak with your GP about it and make sure you're in the right hands if you're desperately wanting surgery. An endo clinic should have your MRIs reviewed by an MDT (multidisciplinary team) which consists of other healthcare specialists like colorectal that may be able to spot endo that your current gynae's radiologist missed.

Otherwise you risk wasting your time and ending up with a lot of heart ache if you get treated by a general gynae. They typically turn around post-op and simply confirm that you have endo, they might even claim to have treated some of it, and tell you to stay on hormone treatment. That's pretty much it

[Forest_Green in reply to LME5]

Thank you so much for such a comprehensive response. This is amazingly helpful information. Honestly, thank you for taking the time to type it all out for me! 💛

I’m seeing my GP tomorrow. I want to tell her what you’ve told me, as I am desperate to get this sorted properly. The gynaecologist I’m under is called Mr Clive Aldrich, who has been very nice and done lots of tests, but I’m unsure if he’s specialist enough? He’s only ever mentioned ablation as treatment, rather than excision (and I know excision is preferable for lasting treatment).

I think I know the answer, but may I ask if you have Endo yourself? (I want to tell my GP with confidence that this knowledge is coming from women who live with the disease, and therefore, have real-world experience to know how this whole process works).

I would obviously prefer that if Endo is found during surgery, that it’s removed there and then, and properly. I’ve read so many horror stories.

Should I ask if it’s possible for my GP to send my MRI images to an Endo specialist? I thought I could only get help from an Endo clinic if Endo has been diagnosed and is quite extensive?

💛

[LME5 in reply to Forest_Green]

Happy to help in any way I can and share as much info as poss 😊 I googled your doctor. He's senior, a consultant, but I'm not seeing anything endo-related with regards to his treatment specialties or interests even. It's great that he's being thorough with investigative testing. He may well have access to an MDT. When your MRI results come through it's worth talking to Mr Aldrich about whether an MDT reviewed your imaging. The MRI report will be on your patient records. If you don't get a copy, you can definitely ask your GP to request one. Either you or your GP can then share it with an Endo Specialist.

Alternatively, if you're comfortable with your gynae, you could be open and tell him that you would prefer being treated with excision with an endo specialist. If he's reasonable, he will agree and might even recommend you one. So just be open to having the conversations with both your gynae and GP and know that the decision is yours in the end.

Yes, I am an endo patient. I was diagnosed by lap 8 years ago and have since been trying to understand this disease through my own research and through the endo communities I'm a part of. You should definitely use endo community when making your case to both your GP and gynae.

As far as I'm aware endo clinics aren't just for diagnosed endo patients. They're for suspected endo cases too. If you're gynae suspects you have endo based on your symptoms and MRI helps make your case, he could even refer you. That might help your case x

[Forest_Green]

There have been major developments for anyone who’d like to know…

I got a referral to an Endo specialist near me (had to demand it from my GP) and he found Adenomyosis as soon as he did an internal ultrasound (my 6th US btw!) and he got me in for a laparoscopy within 3 weeks as he suspected endometriosis, too.

I had my laparoscopy last Friday. He found stage 1 endometriosis in the pouch of Douglas, including extensive Allen-Master lesions. He mentioned some kind of adhesion on my appendix as well. For the Adeno, he advised the mirena coil, so I agreed to have that done during the procedure. Everything was removed.

He’s recommended meditation, as he thinks the nerve pain is an extension of the endo/adeno pain. I’m still experiencing tingling, numbness and altered sensation in my left side but seem to be able to walk better. I’m under a neurologist as well and will be having a nerve conduction test.

I’m hoping it will all improve as I heal, but we don’t know for sure if it’s connected to the endo. Time will tell.

But in the meantime, I’m so relieved and chuffed to have an official diagnosis; I feel validated for the first time in many months!

And I’m so grateful to all of you who helped me gain a better understanding of the disease and how to approach getting the correct help. If I’d never discovered I needed an endo specialist, rather than a general gynae, I wouldn’t be where I am now; on the road to recovery!

I love this community. Love to all of you. X