Negative Laparoscopy--Potential Endometriosis shown on MRI

[RhiannonT]

Hi all.

Bit of background info for you all, I've had Symptoms of Endometriosis since 13, I'm 25 now. Been on birth control most of my life to 'regulate' my periods. I finally had a Laparoscopy in March this year after pushing for ages to get one. The Lap was done by a general Gynaecologist (I'm in Scotland), and nothing was found. I went to seek a second opinion privately, the private gynaecologist says Endometriosis is highly likely even though it didn't show on Laparoscopy and recommended I ask for an MRI scan. I was referred back to my original Gynaecologist (he wasn't the one who carried out the Laparoscopy), and he reluctantly agreed to do the MRI even though he 'doubts it'll show anything'. I had this through the post yesterday. Thus to me indicates they've found something even if it's not endometriosis, there is something there and I'm not going crazy. Any advice on this would be greatly appreciated.

I've attached a picture of the letter.

Many thanks

Rhiannon

[Heloo85]

I cant really understand the letter. Is it saying you have Endometriosis?

The pill does supress Endo. I have stage 4 DIE and out of all the treatment i tried, the pill was the best. It is highly likely the pill is supressing your Endo and thats why 'nothing' was found. That is why Drs will give Zoladex/Pill or such before surgery.. To shrink lesions to make it easier to remove.

If its not saying you have Endo, a consultant will get you in regardless if the results are good/bad.

Its highly likely you may have mild endo somewhere. Mild because youve been unknowingly treating it by 'regulating' your period.

Keep up with your pill and touch wood, if you have got Endo, they will surgically remove the bit that isnt responding to your pill and is causing you bother!

Kim

[RhiannonT in reply to Heloo85]

I'm not on any birth control at the moment! I came off the Depo Injection in April after the private Gynaecologists advice. Himself and the consultant who requested the MRI suggested the coil so I'll consider it. I'm guessing the question mark maybe suggests I would need another Laparoscopy with a specialist to diagnose as I thought only DIE showed up on an MRI. This would need a referral to a centre I'm assuming?

Thanks

Rhiannon

[Heloo85 in reply to RhiannonT]

It will be DIE, hence why i said surgical resection. Im not saying 'mild' as in stage 1, superficial, im saying its not, or certainly wasnt extensive to see with the naked eye, because it was highly likely you was supressing your Endo at the time of your lap.

Its really hard to say, you will need to see an Endo specialist about treatment! Im not allowed any progesterone only treatment! My specialist hasnt explained why, but i ignored his advice, went with my GPs and hospitalized myself. He also told me to take the combined pill for 3 months then break, my GP said it was safe to continue, again i took her advice, got crippled with chronic thrush and now i have a precancerous condition of the vulvar! So seek professional input and follow their advice! Dont listen to anyone else like i did 😂😂

Kim

[RhiannonT in reply to Heloo85]

Thank you so much! ❤️🤗 It's certainly interesting having had a negative Laparoscopy and being told by the consultant that requested the MRI it's unlikely to show anything this has come up 😂😂 he hasn't given me a follow up appointment till December hahahaha!!!

[Heloo85]

You are going on the basis that a person with extensive disease has extensive disease throughout. Its not uncommon for growths to be at various stages! Ie. One growth being stage 4 DIE and another lesion being superficial.. Its also not uncommon for a stage 4 lesion to be hidden, or to only have one singular lesion. I have the exact problem on my vagina.. Which stands out like a sore thumb, because its somewhere i can see. Had that been on my cervix, only a smear would pick it up.

As of now, im pretty sure i have one severe, singular lesion. VIN 3. Late stage precancer which is more serious than Endo. Once it infiltrates, it can spreads. Then i will have malignant cancer.. To say no disease can be found in its latest but earliest form is ridiculous. Not everything stands out like a sore thumb!

[Heloo85]

Lets go on cancer staging! You have IN 1, IN 2, IN 3, cancer-insitu, Stage 1, Stage 2, Stage 3, Stage 4. All that starts with is a singular lesion... Just one.. That eventually infiltrates, gets into the lymphatic system and spreads.... Our objective as people is to find it as early as possible. That one hidden lesion? Why? Because that one lesion can grow a mind of its own and spread. To find it we look for a 'tumour'. You are lucky if you have a 'tumour' and its not 'spread'. You can cut out said tumour and pray for best! That 'tumour' was likely causing all your symptoms..... Now Endo is EXACTLY the same. Unfortunately, most of us aint diagnosed until its advanced. Ie, it infiltrated and spread! That doesnt mean that someone wont get lucky, get diagnosed with one severe lesion that is yet to spread. Just like me and my IN. Thankfully everytime i get IN i get symptoms, so i can pop off to Drs and get it removed before it becomes malignant. That 'growth' causes me an array of upset, problems and symptoms! If i let it become a tumor it will likely spread and kill me. Just because ive caught it early, doesnt mean i dont have a disease.. And its exactly the same for this lady! Except if he Endo showed on MRI it is far more advanced than my SINGULAR pre-cancerous GROWTH.

[RhiannonT]

Sorry everyone. I did not intend for arguments to start on this page due to my post. X

[RhiannonT]

Thanks very much. I'm sending the forms off tomorrow. Will be interesting to see what it says. X

[RhiannonT]

My period started this morning for the first time in 4 years. 😭 😭 It's extremely painful. Obviously it's shown on MRI I might have potential Endometriosis. There were clots in my period today, is this normal coming off the Depo Injection having not had one for years?

Thanks

Rhiannon

[Bubble_by in reply to RhiannonT]

I had the same thing (I'm on the depo inj too, I've been on it before) and started having decidual casts too... It's normal when starting/coming off the depo as your body is trying to get used to a different hormone level.

Hope you feel better soon

[RhiannonT]

Hi there. I finally have the MRI report through. I'll post a photo here, any advice/comments welcome. X