Don't know how to feel

Hi! So I had an appointment with my gynae today and were discussing the results of the MRI which showed no endometriosis..the doctor is not convinced that there's no endo since I am having all the symptoms of it, plus she felt a hard lump during the pelvic exam. Now I have to wait for a date to have a laparoscopy.

I am starting to have some worries that they will find nothing and still have all this pain and the other annoying horrible symptoms 😔😔

Has anyone have a similar situation as mine?

Thank you for reading xx

[Kirst625]

Hi, don't be disheartened by a clear MRI! (Easier said than done when you're desperate for answers I know). Im certainly no expert but from what I've read, scans and MRIs can be clear for several reasons, chiefly either the skill of the person deciphering the images or that Endometriosis is growing in places not detectable, e.g. surface of structures / organs rather than having infiltrated. I had a clear MRI and like you was worrying half the time about them not finding anything and the other half thinking this surely must be Endo after having read so extensively about it and really paying attention to my symptoms by doing a diary over several months. I've just had a laparoscopy in early Jan and have had Endo excised from both pelvic walls, around my ureters, pouch of Douglas and 2 recto-vaginal nodules removed.

The really important thing is to ensure that your gynae at least has a specialist interest in Endo and if there is either suspected bladder or bowel involvement you may be eligible for referral to a specialist accrecited BSGE Endometriosis centre. I've read so much about women having laparoscopies performed by general gynaes without the right level of training and expertise and Endo not being found - either because not everywhere in the region was thoroughly explored e.g. only typical gynae sites examined and not in other really common sites for it to grow, or because the gynae did not recognise it as Endo. Many women have then had to push for a second laparoscopy with a specialist and low and behold have been diagnosed.

Hope this helps some,

Kirsty

[Hidden in reply to Kirst625]

Hi Kirsty!

Thank you for your reply and sharing your experience.

Actually I am going to an Endometriosis center and my doctor is a specialist (thankfully) ,but as you said I am desperate for an answer to know what is wrong with me..the good thing that there will be a laparoscopy and I will make sure that the one who will perform it is an endo specialist.

Best wishes xx

[Lofty1589]

I feel the exact same as you. I finally have my MRI on Wednesday - found out yesterday after 6 weeks of waiting for an appointment 🙄

I’m petrified that this could all be in my head despite having all the symptoms etc. Hopefully your lap date will come through - and mine! 🤞🏻- and we’ll get the answers we need xx

[Hidden in reply to Lofty1589]

Thank you!

And yes, I was thinking that could it be just in my head?!! But I'm trying not to think about it.

Hope we both get the answers we need. 🤞

Take care xx

[alpacamadness in reply to Hidden]

IT'S NOT IN YOUR HEAD.... keep advocating for yourself!

[Hidden in reply to alpacamadness]

Thank you! And sure I will.

[Jue23 in reply to Lofty1589]

I feel the same, been of work since February, just no energy, in a lot of pain in my abdomen and back , had CT scan as thought Kidney stones, come back all ok. However the 2 GP’s lve seen for yrs are thinking Gynae so had scans and nothing. The Gynae I’ve seen not been very nice so lm off to a different one so fingers crossed

so got MRI end of April was also referred to Gastroenterology going for the cameras this week even thou he doesn’t think it’s necessary but l think it’s processes of elimination.

I just want answers of why lm in so much pain and it’s stopping me from what l normally do. Fingers crossed we all get answers sooner then later x

[Hidden in reply to Jue23]

Hi Jue! Hope you feel better so soon and get answers!

Best wishes xx

[Angellouise]

My daughter has all of the symptoms of endometriosis , she had laparoscopic surgery and they didn’t find anything. She is getting the lupron shot which helped her pain for a month then it stopped working. She is going to try it one more time . I wonder if they not see it , I don’t know what the answer is. I hope you get yours figured out. Good luck

[Hidden in reply to Angellouise]

Sorry to hear about your daughter. Did she see a specialist in endometriosis?

Guess when they perform a laparoscopy they will see the endo for sure.

Wishing here and you all the best of luck and strength xx

[Angellouise in reply to Hidden]

Thank you. I am looking into seeing a difference Doctor. All the best to you

[Angellouise in reply to Hidden]

Thank you

[Kayl101]

I had mine yesterday and I was told no endo or anything everything was clear initial reaction I was happy but then the sadness got in what’s causing my pain and 3-4 months of conintuous bleeding if there is nothing wrong?? I don’t remember much but I’m due a follow up in 6 weeks, my gynae was also sure she’d find endo so now I’m back to square one because what’s this mysterious condition that’s causing me to bleed for so long and I’m also not getting pregnant via medication or naturally next option is IVF but I just don’t know... right now I’m just focusing on recovery and hoping to get more answers and probably see an endo specialist because I can’t just take “it’s fine” as an answer if it was fine then every woman would bleed for this long.

So I’m in the same boat as you, happy as I am it takes me back to square one of not knowing

[Hidden in reply to Kayl101]

Hi Kayl, this must be frustrating for you not knowing what is wrong.

I totally agree with you about the continuous bleeding is not normal at all!

Guess it is much better to see an endometriosis specialist and hope you get a proper diagnosis and answer.

Wishing you a speedy recovery dear xx

[Angellouise in reply to Kayl101]

So sorry you are going through this. I guess finding another Gynechologist might be the only thing to do to see if they have any answered. Good luck

[EndoBattle]

Hi Sam, don’t be disheartened. Unfortunately the only way really to properly diagnose endometriosis is a laparoscopy. I had a cat scan and an MRI which showed nothing. When I had my laparoscopy endometriosis was everywhere. As they say cross one bridge at a time. There are a couple of books that I think will really help you. Reading them really helped me and made me realise it wasn’t all I’m my head “The Doctor will See you now. Recognising and treating Endometriosis” by Tamer Seckin And The Endometriosis Health and Diet Program. Get your Life Back” By Dr Andrew S. Cook and Danielle Cook. You can get them new and used from Amazon. Hang in there. I’m sure you will get some answers soon. Thinking about you Claire xx

[Hidden in reply to EndoBattle]

Hi Claire, thanks a lot for your advice and kind words.

Going to get one of these books soon!

I hope the same!

Much of love xx

[alpacamadness]

My surgeon told me not to even bother with an MRI cause it usually wont show endo. Your fear that they won't find anything is very common. I was terrified. My excision surgery found endo and yours likely will too if you're having all the symptoms of endo. Make sure your surgeon is thorough and well respected... he should be able to show you pics or video from the surgery.

[Hidden in reply to alpacamadness]

Hi dear! Thank you so much for the support!

The good thing is that my surgeon is a specialist and she said the same thing as you did about showing me photos of my laparoscopy.

Wishing you all the best xx

[Angellouise]

My daughter had had the same problem. She had a lap done and they say no Endo She has heavy bleeding for weeks at a time and pain 24/7. She has tried lupron shots with no success and has had the merena IUD , so far it’s been six weeks and the bleeding and pain is still bad.

I wish you luck in finding an answer for your pain

[Hidden in reply to Angellouise]

So sorry to hear about the pain your daughter is going through..actually I had the mirena iud few last summer and it's helping , thank God!

I hope you can find an answer and relief for your daughter as well..

Lots of love xx

[Angellouise in reply to Hidden]

I can’t believe it she is feeling better . It has been 2 1/2 months and it is finally helping.

Thank you for replying.

[Hidden in reply to Angellouise]

So happy to hear that! May she always feels better and better ❤

[Angellouise in reply to Hidden]

Thank you