Hello, l m new here and its my first post. I been suffering with daily pain for a while no help from GP called them probably 10 times and they were keep pushing me go on a pill and didn’t want to refer me to gyno. I decided to go to different country and go to gyno and ask. He did all tests ( swab etc) and all clear, and then he did ultrasound and said he can see adhesion on left side- ovary and womb l think. So he said you have endometriosis but obviously you need MRI and laporoskopy to confirm for sure.
i then came back to the UK managed to finally get refer to gyno and she said they will repeat ultrasound but she will NOT do MRI. She said it’s not needed and they can do that after laporoskopy to check did endo came back.
The thing is l m very very scared of surgeries, never had any! And l would like to maybe avoid if possible or at least investigate before as much as possible so you know what you might see when you open me.. Also l think l should have MRI before, do you think l should do MRI privately? How will l get referred to private mri?
i also changed my diet completely, not eating UPFs ( only occasionally) and l m doing cardio workout in the gym every day for at least 30 min which helped massively with pain! If l dont go to the gym pain would come back after few days but it’s easy fix. So l might postpone my surgery anyway as l think l m managing it. But if MRI show a lot of endo/inflammation then with no question asled l would do it.
please tell me what you think? And shall l do mri privately ?
sorry for a very long post and than you!
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Natashica
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Hi Natashica, I am now post menopause but I had endometriosis and had two laparoscopies. It is such a tiny incision, you are only asleep for a little while and it is the most accurate way to assess the locality and extent of any disease, if any. Sadly my daughter is struggling with pain, she too is needle phobic and refuses to go anywhere through the fear. She has, though, been open to trying alternative treatments as she witnessed my journey and saw the massive improvement following treatment with a medical herbalist who prescribed tinctures .From the age of 40 to 50 I was totally pain free. For peace of mind, it is worth having a look inside, so you can get the appropriate help without guessing what stage you are at or missing any necessary intervention needed that could delay or hinder any improvement or indeed prevent things getting worse. Be brave! Its really such a tiny op that could save lots of issues down the line! Good luck😊
I would definitely push for MRI before going into surgery. The MRI with contrast will provide a clear picture of the extent and other organ involvement before proceeding with surgery. I'm amazed medical professionals are pushing invasive surgery first before a non invasive zero recovery MRI. Complete madness. Good luck with it all.
I'm in the same position as you. I've had ultrasounds, had an hsg, all came back clear but in pain most days and appears to be getting worse.
Do not want to go for lap as same as you, a bit scared and don't want more scars. Also starting ivf soon and don't want the lap delay that.
Same as you, have asked several times about having MRI first and have been told no. Decided to go private for a second opinion and was told the same thing - no point in MRI as it won't show mild endo. Apparently lap is the only way to really see what's going on, but I've been told that lap comes with it's own risks, same as any surgery.
So hard to know what to do next!!
Sorry I know I haven't offered you any advice here, but just thought that I'd share as I know exactly the frustration you're going through! X
I agree with you in pursuing an MRI. Long story short I had stage 4 endo and adenomyosis confirmed via lap July 22. A few larger lesions were removed however the severity meant I needed multidisciplinary surgery at a later date ( done recently). Post lap in 22 I had severe pain still and deterioration of colorectal signs, urogenital signs which was dismissed by nhs. Just a month after the lap I paid for an mri which found rectovaginal nodule, furthur lesions and an endometrioma.
If the Mri was done pre lap in my case it would of spared me the first op as deep endo would of been identified. After the mri confirmed rectovaginal/ deep invasive I was told the waiting list for MDT was 1 to 2 years here. Any surgery can leave adhesions/ scarring so in hindsite now I know so much more about endo I would of paid for an mri sooner or sought the opinion of a level 2 sonographer.
Even if the mri comes back clear then they can still do the lap hopefully knowing in advance its not severe stage thus potentially not needing furthur surgery after diagnostic lap. But if there were deeper nodules or severe changes it could pick this up and spare you a diagnostic lap and risk of adhesions/ scarring , anesthetic.
I hope you are OK re pain in the mean time. I'd also stress if any bowel or urinary signs this could suggest severe stage so if this is the case certainly the mri May spare you 2 ops .
Mri also depends on who interprets it if not trained to an appropriately can be missed so please do your research ( ask specifically for experience in this field). there are also level 2 sonographers ( there's post by lindle) who can look for the sliding sign and other criteria suggesting advanced disease etc so other options are possible before an invasive procedure .
Thank you for sharing this. I have been fighting tooth and nail to get an MRI BEFORE the diagnostic lap, and even with ultrasound which showed some adeno (and of course millions of ultrasounds with no visible endo in the past 5 years), neither a GP nor my OB would refer me. So I will also be paying out of pocket in hopes of saving myself from 2 operations. As the only way to treat adeno non-chemically is a partial hysterectomy and I don't want kids, I feel like this might be a done deal if I can just get the imaging to prove it before surgery. I know a partial hysterectomy only manages the adeno, but it also could massively help with endo. I have had it with the medical community and their supposed "do no harm" oath that, very clearly, no one is too worried about. So tired of being treated like I am stupid when honestly, I feel like I'm reading more empirical studies than the doctors sometimes.
Yes it is incredibly frustrating having to self advocate and being dismissed. Unfortunately I ended up private for the same reason. Its worth it if it can spare you 2 ops in my opinion. And hopefully some peace of mind if there are no larger nodules or deep infiltrating endo identified ( mri won't show superficial lesions).
Make sure you ensure the mri is being interpreted/ done by someone trained in identifying endo etc. And ask for copies of reports and even the mri on disc ( helps for future appointments)
Get an MRI privately. It's around £600 and you just go to see an endometriosis specialist first £200. If I'd had an MRI first they would never have attempted my hysterectomy as it clearly showed stage 4 endo with cysts and blood I'm my fallopian tubes. You need to know as much as possible.
push for an mri if your not keen on surgery. My endometriosis was confirmed via MRI. It would be best to go to a hospital specialising in endometriosis if you can.
They offered me the coil first to manage symptoms but I didn’t want that so I’m having the surgery.
I would too push for an MRI. Although it doesn’t always show endo on an MRI, I think it is still worth it. I’ve had 2 laparoscopies, the first one was general gynae and all I’d had before that was an ultrasound which didn’t show anything, general gynae then said they didn’t find endo in the lap so I pushed for further testing, had an MRI which did show deep infiltrating endo and I was referred to a specialist, where I then had my second laparoscopy and excision of endo/diagnosis.
Basically, if I’d personally had an MRI before my first lap, I probably would have been referred straight to the specialist and only had to have had one diagnostic surgery.
I hope it all goes well for you, remember it’s your body and you know best x
Hi Natashica, in a bit of a similar situation. Been offered privately surgery if I don't choose to have the coil( I can't and won't for another medical reason) but NHS reluctant to do anything apart from coil( consultant shrugged when I asked !) I also have changed diet in desperation, and try to go swimming as pain allows, as this does seem to reduce pain. I only recently found out MRI scan may be able to show what's going on, as it was not offered by either NHS or privately. I am super reluctant to have surgery like you as I also don't like being put to sleep and have been told by NHS consultant I am more at risk due to my other condition Ehlers Danlos( risk of complications) I think an MRI for people who are a risk or scared of surgery should be agreed as an option. Hope you are listened too, and feel better soon x
Hi Natashica, I had my diagnosis privately as like you the NHS tried to fob me off for about 18 years. My private consultant did the MRI before surgery to know what he was looking for and where, it makes more sense but MRI is expensive which is most likely why NHS just wanna get in and do the op. Thing is, if it’s severe and has tied organs down you’ll need an MDT and a further surgery so I’d try push for an MRI or look to contact a local private hospital if you can afford it as it is very expensive to go private. Best of luck xx
Hi, my advice would be to move doctors - the GP your seeing at the moment sounds awful.
I had ultra sound, internal scan & MRI before having surgery. Unfortunately, the only way to see endo properly though & the extent of it, is with the naked eye I.e. laparoscopy, I would seriously consider being put on the list for surgery - this can be up-to a year wait anyway.
Hello! So sorry to hear you are experiencing pain. Endo is awful. However, an MRI still NOT show you anything. There is no machine or imaging that shows endo or lesions; it simply cannot pick it up. The only way to see endo is to do the laparoscopy. Think of it this way: Continue to live with pain which will 100% get worse ... or get the quick surgery that gives you your life back. As a stage 5 endo warrior... get the surgery. It's not nearly as bad as not getting it will become for you. Best of luck to you!
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