? Endometriosis and MRI scan

[mumof1879]

I have been back and forward to the doctors over a number of years with abdominal pain.

I have seen urology for bladder issues that I never got to the bottom.

Then same general surgeon who after a CT scan said IBS.

Most recently I have seen gynae who think endometriosis. Ultrasound scan clear but I know that means nothing. Next up is laparoscopy. I have had multiple surgeries over the last five years following an accident and I asked if it would be possible to have an MRI scan before a laparoscopy just to give me more of an idea of what is going plus it may mean they have an idea too and I could avoid a diagnosic lap and then needed a second to treat if requires input from a different dept. I was told no and must have lap first. I have had so much time off work and so has my partner to care for the children while I have been out of action and one of my children has some issues with mobility and so agreeing to surgery is a huge thing for childcare and financially and it feels so out of control as I have absolutely no idea if it even is endometriosis and feel the MRI may give a better idea of what’s going on. Is it worth asking again about the MRI? Or could I privately for the MRI somewhere I can make an appointment or would I need to see a gynae privately first for the request?

Have people had MRI’s pre laparoscopy and it been helpful?

While endometriosis can sometimes be seen on an MRI it generally isn't used as a diagnostic tool because it isn't reliable. You could perhaps consider a colonoscopy to see if endo lesions are inside the boael, esp if you have bowel involvement which it sound like you do with IBS being diagnosed (a frequent misdiagnosis).
After this surgery is the next option. However I would also consider the outcome of a confirmed diagnosis - would you consider a hysterectomy if suggested? If not, then what is the purpose of the surgery other than confirmation? You can often be treated with hormones going by symptoms without an official diagnosis.

Sometimes having it diagnosed is beneficial but it depends on how badly it is affecting you and what treatment options you would consider if you were diagnosed.

Having said all of that, I was lucky to be diagnosed by MRI. I manage it with the pill and pain relief. My dh wants me to consider a hysterectomy because he hates seeing me in the cycle of pain, but I dont want to go through major surgery and the subsequent risks right now, so I put up with the pain and side effects of the codeine.
It's a very personal 'journey' as it is so different for everyone

You could get an MRI privately. However they are generally not much use for endo.

I signed a consent for them to treat whatever they found in a diagnostic lap and they treated endo in that lap.

You may or may not be happy to do that.

Whilst I find the symptoms horrible, I actually find the anxiety around nobody giving me a clear answer worse than the symptoms. I would actually like to find the cause and try the pill/IBS treatment minus the anxiety and see if that helps. Just treating the symptoms minus the cause doesn’t change the anxiety around not knowing. I have been through a a lot physically and if possible I would like to leave my body alone and not go through surgery and accept the symptoms will come and go but find peace that I know the cause and have the option of surgery if that changed in the future.

I somehow replied without quoting your post, but thank you for the reply. It makes perfect sense and kind of understands how I feel about surgery.

Op

can I ask what your symptoms are please?

im also having bowel/womb related pain and no one seems to have a clue

Im terrified it’s something sinister

I've had endometriosis diagnosed with an MRI and a couple of ultrasounds. My symptoms are controlled with the mini pill, so I've never needed a lap. I'm pretty averse to invasive treatments, so I'm ok with the information and treatment I've had.

I have endo and IBS.

If you have IBS the treatment is to try to work out what is triggering it. So in practice this means an exclusion diet and re-introduction of foods. I found out that I am lactose and oat intolerant.

You can do this yourself, with or without an IBS diagnosis. It's not a quick process however as it can take some weeks for your bowel to settle down if it has been constantly irritated.

With endo, hormonal treatments to stop periods help reduce symptoms. However if you already have a lot of endometrial deposits on various parts of your abdomen then the impact will be less than if you get the endometrial deposits lasered off first in an operation.

I had the diagnostic lap and was treated during this. Now have the mirena to control symptoms. The surgery was the single best decision I had made for my health, the difference in my symptoms was unbelievable and I was actually pain free for the first time in many years. I had loads and loads of symptoms, which are returning now but it helps to know that surgery will rectify this again.

I understand the anxiety around them not finding anything and not giving you any answers, I felt so much relief when I actually got diagnosed because I finally had a cause for all of the pain.

What are your symptoms OP? If you don't mind me asking?

I actually feel quite tearful reading the replies. I have yet to find a medical professional validate my feelings and concerns, so to be able to discuss with those that understand really helps.

I have had heavy periods since I stopped breastfeeding my youngest but previous to this had been pregnant or BF for nine years so can’t really compare to pre children, lower abdominal pains more on the left side, dull ache around my belly button but mainly towards the left, constipation, lower back pain and pain when sitting down. I often get a couple of days between my period finishing and before the build up to ovulations starts and then a few days before my period where I feel a bit better. Aside from being heavy my periods are actually ok and not that painful, it is the days around ovulation that are the worst.

I am not surprised you feel emotional - it’s so frustrating isn’t it?

We are led to believe that there are experts who can treat and diagnose us. Not my experience at all amd even more difficult x 1000 when two different areas of the body are impacted requiring two different specialisms to come together

I had mine diagnosed by lap 23 years ago. They also did a hysteroscopy, d&c, Lasered the endo off and fitted me with a mirena coil.

I've not had pain or a period since. Will be getting my final coil fitted next year as it also helps with menopause. It was life changing.

I understand the just not wanting to be fiddled with anymore, but this is a day case procedure and fairly quick. It could transform your life.

I completely understand this. If I hadn't had confirmation via MRI I imagine I would feel the same. Could you afford to have an MRI done privately to see if anything shows up? Your gp could probably refer you?
I am so done with going through procedures as well. It's so draining. The problem with womens health is that you have to push hard for them to listen to you, which is even more tiring.

Thank you so much.

I called the secretary today and asked if she would ask for me whether an MRI would be possible and they have emailed to ask. Wonder if I will ever hear anything back…