Told by gynae MRI could not be done to check for endo/adeno, confused!

[PAPanda]

Hi I posted last week as due to go for hysteroscopy and was pretty worried.

Gynae was friendly and due to me saying about pelvic pain offered option of general anaesthetic if I wanted it, which I do.

I said that previous ultrasound had showed a bulky womb, he said that was prob due to the fibroids I have (3 but only 2-4 cms) and that the MRI scanners would not accept a referral from him for this.

Surprised as it says on the NHS adeno pages that this is how they diagnose it?

He'd suggested 'keeping things simple' due to my age I think(50) as would be in menopause soon and symptoms should improve, and just having hysteroscopy and mirena fitted.

I asked if I could have a laparoscopy to check for both conditions whilst I was having the hysteroscopy & mirena under G.A. and he agreed.

I have been to gynaes on and off since I was 18 with pelvic pain, painful sex, bad period pain, recurrent thrush & cystitis, bladder pain, stabbing pains in rectum and lower left abdomen etc , but because I don't have heavy periods not much was ever investigated apart from blood tests and ultrasounds. No one ever even mentioned adeno/endo - i read about it in an article and then on here.

I didn't have time to discuss all of my other symptoms and got the impression from the gynae that he felt there wasn't a huge amount of resons to have a lap...

I am doubting my judgement now as it is an operation with risks as all are. But I have found all my symptoms distressing over the years, the period pain has got lots worse in perimenopause and I just want to know.

Should I try to push for an MRI? How??

Is a hysteroscopy, lap and mirena too much to havd at once? (Can't cope with idea of coil fitting without anaesthetic so thought i may as well try it!)

Thoughts please!

[Zanlancaster]

I asked about mri but they never did it. The only way to really diagnose endo is a laparoscopy which I had 8 years ago. I put off hysterectomy then but the pain is crazy now and so at I have had decapeptyl injection to confirm it’s endo pain and it’s stopped so I’m going to have ovaries removed in December. I’ve had enough of the pain

[PAPanda in reply to Zanlancaster]

Glad to hear you have a way forward at long last, thanks for the info about lap and wishing you all the best for December x

[purplevelvet9]

Morning! Firstly, sending you all the love for going through this journey.

Secondly- push for the MRI with your GP. They absolutely can refer you (I had one recently). Unfortunately it seems to be one of those “depends who you see as to what treatment they’ll give you” type situations. Your symptoms alone should be enough reason and you deserve answers and to live more comfortably.

To answer your Q about having all three surgeries done at once- that’s a personal choice imo. My GP and the gynae team tried to push the Mirena coil onto me each time I had a procedure which I get, but having hyst, lap and coil at the same time sounds like a lot to me! Again, personal preference so that may be one you sit with for a while until you decide what feels ok for you.

Good luck 🫶🏻

[PAPanda in reply to purplevelvet9]

Thanks so much - that's helpful to know, I felt like I couldn't go back and ask my GP as they hadn't referred me for an MRI when I mentioned it to them months ago, but now feeling more empowered to ask my GP again.

[Trekkie84]

Hi, thanks for sharing and I'm sorry to hear your symptoms were ignored. The only reason why this doctor is denying MRI is because they are probably not up to speed with the diagnostic methods. MRI can absolutely be used to diagnose endo and adenomyosis IF the radiologist interpreting it is an expert in spotting the features and signs. Unfortunately there are very few of these experts as well as there are few surgeons who are really skilled at operating on endo and adenomyosis. I would try push to get an MRI and I would suggest getting a second opinion of that's available to you. Also the management of menopause will be influenced by endometriosis so make sure you mention it if you want to get HRT. Good luck xx

[PAPanda in reply to Trekkie84]

Really good points - I put off starting HRT after being prescribed it because I then realised my symptoms may mean endo or adeno, and felt freaked out that I would name everything worse! As far as I understand, IF I can tolerate Mirena OK it may help, and can be used as the progesterone part of hrt alongside the oestrogen?? but need to find someone in my GP practice who can advise with all that.... I will deffo try again to get an MRI 🤞thanks so much for the advice x

[Trekkie84 in reply to PAPanda]

I think you did the right thing as endometriosis has a hormonal component and it's important to assess it if you want to get HRT. Perhaps something to discuss with a good gynae. The Mirena coil can be one of the managing methods for both endo and HRT as far as I know. It's the smallest dose of hormones and as it's topical and doesn't get into the bloodstream should also be tolerable but as always the only thing is trying. I was also considering it before I got my first diagnosis of endo a month ago. I may still get it.

If the GP is not helpful with HRT try to look elsewhere for that as well. GPs can be weird about HRT as well unfortunately, but you have the right to be comfortable and healthy. good luck!

[Starry1977]

hi I had a lap and hysterescopy at the same time, I declined the coil. Having the too together wasn’t a problem. I too would push for mri, I got adeno diagnosed that way and also My extensive scarring and further nodule in POD. Unfortunately like you I had a gynea that thought there wouldn’t be anything as my ultrasound only showed a cyst. I only had lap to get this removed which I went private for. Also my symptoms had never been that severe. During my lap they found kissing ovaries, frozen pelvis, obliterated POD, endo on bladder and appendix. I wish I’d have known all I know now as I’d have had the mri first as I couldn’t get all my endo removed as there wasn’t a bowel specialist there. Maybe if they’d known the extent before my lap, it would all be removed now And not just part of it. 🤷‍♀️

[PAPanda in reply to Starry1977]

That must have been quite a shock to learn after the lap, it seems to make sense that they would do an MRI before surgery for the very reasons you mention. My ultrasound showed a cyst aswell but they didn't seen that concerned, endo and adeno present in so many ways it seems crazy that there isn't a better diagnostic pathway. Wishing you all the very best x

[1Poppy1234]

I'm struggling to even get a referral for hysterectomy on the NHS as I am close (mmm) to menopause at 51. I stopped going with my symptoms as I never got anything done I also suffer with hormonal migraines. I've had a hystoscopy biopsy and replacement coil fitted I'm no better I'm on decapeptyl jabs for 6 months but had to pay for a private gynae to get any help. I have a swollen stomach with Adenomyosis and endometriosis. I'm so uncomfortable with stabbing stinging pains all like you've described. It's very hard to keep smiling.

[PAPanda in reply to 1Poppy1234]

It so is. Hope that you get some better support and more symptoms relief with your new private gynae x

[BloomingMarvellous]

Adenomyosis and endo can be seen - again not 100 % but for many - on an MRI. You need the correct training etc to do so. The percentage is high enough that it’s recommended- but first find the person trained to do so they are few and far between.

Bulky womb. Indeed it maybe caused by fibroids but it may also be caused by adenomyosis or both ! Mirena coil is usually the preserve of younger women where they are trying to preserve a womb for the option to try for children. It is not an effective method to manage either fibroids or adenomyosis. I feel you have been given potentially poor advice but I don’t know your medical history or preferences.

Ensure you research where your appropriate trained MRI is available locally, (!) and research who is your local Adenomyosis and endo specialist and get a second opinion. You are not fully informed so of course you can’t make a decision about treatment.

[PAPanda in reply to BloomingMarvellous]

Thanks so much - it's all a bit overwhelming when you get to see the gynae, my appointment was a years wait after I ended up in a&e because of pain, so it would be good to take a step back and get some more info as you suggest.

[BloomingMarvellous in reply to PAPanda]

It’s so important as the waits are so long to get really armed up with info. I feel your pain on this one. Check out best practice , know the NICE recommendations beforehand and ensure you’ve a list of what you want going forward. Trouble is we often go in knowing little and trust the advice is going to be up to date and correct. It’s often not and then we are left feeling so frigging confused. We often learn this only by the kind of experience you’ve just had which is so exhausting, time wasting, inhumane, and plain disrespectful . So arm yourself and ask for an urgent second opinion 😘

[JulesUK]

Personally I don’t think it’s a problem having it done at the same time. As far as I’m concerned I’d rather be out under GA and have as much investigated as possible to get the correct diagnosis. Doctors generally seem to go for the “simple” option or the “wait and see” approach. You want the approach that you want and unfortunately often have to push for it.

[Inonge1]

Hi. I had my endo and adeno diagnosed by an MRI after being led around the houses for nearly 30 years! Keep pushing!

[PAPanda in reply to Inonge1]

Thankyou!!!! Glad you got the answers you needed at long last, and it's encouraging to hear x

[Joeyb247]

Hi I thought I would share my experience to maybe help you to make a decision. I had previously (2017) been referred to gynecology for a possible ovarian cyst had MRI and ultrasound and booked in for laparoscopic oophorectomy, however once he is in he sees endometriosis lots of adhesions so leaves ovaries and removes some endo. This year due to suffering with heavy bleeding and anemia I was again referred to gynecology they identify adeno, possible fibroid and bulky womb, so scheduled for a hysteroscopy with a merina coil fitted - following this procedure I was fine just had the following day off work due to the anesthetic. I was booked in for a laparoscopic hysterectomy start of Oct, however even though they were aware of the endo and I had an MRI with the dye the surgeon was blindsided by the severity of my endo and he was unable to complete the surgery due to everything being stuck together, so will have to have it rescheduled. So in my opinion having an MRI although may differ person to person did not help much to identify my endo and the extent of it, if you are having an anesthetic for the hysteroscopy and coil it may be beneficial to have the laparoscopy as this will tell you definitely if it's endo. Following my laparoscopy the recovery was not too bad some mild pain / discomfort - mostly from the gas they pump in to you, felt fine after a week of rest.

Wishing you lots of luck and hope you get some answers and help.

[PAPanda in reply to Joeyb247]

Really appreciate you sharing, thankyou ❤️ It's reassuring to know that I'm not being OTT requesting the lap too, he seemed a bit surprised I requested it but thankfully agreed. Good to get an idea of what recovery is like from a lap too.

Wishing you all the best x