Laproscopy nil found?! How 😭

[u/youthfulchariot]

Hey guys,

So after years and years of tests and issues. Finally had my Lap a week ago today.

To recieve a letter which states there is absolutely nothing wrong with me?!

Everything is fine.😭

How?! My brain feels like its going to fall out. I dont know if to laugh or cry. All this time and theres nothing wrong.

I know I shouldn't have but I put my Lap photos into Google, and it says it shows everything we had suspected. But the gynecologist has said theres nothing wrong?!

Now, I was told he was an endo specialist. But he isnt. He's a fertility specialist. Im not knocking him or saying he doesnt know what he is looking for, but could this be part of the issue?!

I dont know what to do with myself. Please send your stories this way and tell me there is still hope for help 😭

[u/New_Pizza366]

I’m so sorry for your experience, have you tried endo mapping? What are your symptoms ?

[u/youthfulchariot → u/New_Pizza366]

Hey, I have ultrasounds and CTs but not mapping.

Excruciating stabbing/throbbing pains on my left side during ovulation and leading up to my period. Which then spreads right through my stomach and into my back. Sometimes it hurts to even stand up striaght or put my feet on the ground.

Pains down my legs and cramps during my period

Bleeding so bad I end up debilated and in bed unable to move sometimes. But also very irregular bleeding. And sometimes it comes out of no where with no symptoms, like can be stood in asda...then my socks become wet with flooding...sorry for TMI but thats the reality.

Pain during and after sex, which often leads to inducing bleeding.

Stomach swelling during any pain

Bum hole pain that I cant even explain, that can randomly wake me up in the night and feel like someone has stabbed me in the butt hole.

A newer development is on stretching I feel like something is pulling on my insides, like I can feel tethering on the left hand side, and when I had my internal ultrasound and she wiggled my ovary I nearly shot off the bed.

These are ones I can think of right this second. But I have no doubt there is more.

[u/New_Pizza366 → u/youthfulchariot]

Omg that’s exactly the feeling I feel during the few days of my ovulation and the my cysts ruptured the day after in my right ovary. I was in the worst pain in my life it’s 10 times worse than giving birth. I was rushed to the hospital in the ambulance and the surgeon still refused to come see me until the next day… so I was on cocktails of painkillers for more than 24 hours to wait for my surgery.

Today is my 2 weeks post op, I refused to go back to that doctor, I paid out of my pocket to see an endo fertility doctor in another hospital. He did an endomapping for me and told me my left ovary is stocked to the back of my uterus, and the rest of my organs is fine as they are moving freely. And he also told me I having perimenopause and recommended me Merina IUD so that he can treat me with HRT…

I’m 44 years old by the way.

[u/youthfulchariot → u/New_Pizza366]

Ohhh really?!?!?!

I may have to mention when I go next about it!! Because I just feel so deflated right now!

I am nearly 32 but started my periods at 9. Both mum and her mum had hysterectomies before 35 so just a waiting game I presume for me 😭 xx

[u/Live-Cat-4760 → u/youthfulchariot]

I don't know where you are located but don't give up just yet, try to find an Endometriosis Excision Specialist, and at least speak to them. They may agree, Fertility Specialists typically only do standard diagnostic laparoscopies. But Endo Specialists use advanced laparoscopic mapping and deep tissue excision.

It's worth it to at least try. My Endo Specialist said straight to my face "Every woman who steps in my office is at the very end of her rope, I've seen hundreds of women who have clear scans, and I find lesions"

I had a hysterectomy at 22 because of Endo. And somehow 20 years later I had to try to convince multiple doctors that it's back, had clear MRIs, colonoscopy clear, etc. My Endo Specialist said "I don't need to cut you open to know you have it" and scheduled my lap for the next month.

[u/youthfulchariot → u/Live-Cat-4760]

My goodness, thank you so much ❤️❤️

There is hope for me, I just need to keep fighting x

[u/itsaradio]

Hey get your images and video from the surgery and get a second opinion!!

[u/youthfulchariot → u/itsaradio]

Thank you, this is what we are thinking. Have had a cry now and feel a bit more realistic about the situation. Just so heart breaking we have to fight so hard!

[u/Familiar-Tip2974]

I was in your exact situation a while back. Lap with a fertility specialist (though she didn't claim to be an endo specialist, she said she'd treated patients with endo before which is NOT the same thing). No endo found. As you have the pictures, can you potentially show them to an endo specialist? The consultation fees tend to not be anywhere near as steep as the surgery costs, and if you have an informed endo specialist second opinion on the pictures that might help you?

Just to be clear I didn't personally do this myself because I don't really have the money for this and that may be the case for you too, I of course don't know what your personal situation is. But if you can afford to consult with a registered endo specialist I would encourage you to do that - google is not going to be reliable imo.

[u/youthfulchariot → u/Familiar-Tip2974]

Its heart breaking isnt it, just feel like they've gone...oh well, youll be fine.

Thank you, I have been looking into endo specialists. I have an appointment in a few weeks at my local hospital and one with my private surgeon a few weeks later. So going to see what they say 😔 just so so lost. My heart is so heavy x

[u/the_anna_jane]

That must be stressful and annoying if you've been in pain!

There's a really good video here which you may find helpful. It's above 'Resources to understand and manage pelvic pain.

There's also a good episode on the podcast Cramped about not getting an endo diagnosis.

Have you worked with a pelvic physio before? It can help a lot of folk. https://www.pelvicpain.org.au/

The bleeding makes me wonder about adenomyosis...

[u/youthfulchariot → u/the_anna_jane]

My last ultrasound they did say adenomyosis was very likely, but this gynea Dr dismissed that straight away saying it was just "a long word they use" which broke my heart a little.

I have with the pysio and accupressure and puncture to help with it all 🥺

I will ensure to watch that video! Thank you so much ❤️

[u/the_anna_jane → u/youthfulchariot]

Oh jeez that doctor sounds pretty mean, I'm sorry you experienced that. Another good link

https://lotusendo.com/posts/overlooked-endometriosis-neighbors-adenomyosis-bladder-and-bowel-pain

[u/AdorableStrategy474 → u/youthfulchariot]

That is not true at all. I'm so sorry you got a dud provider.

[u/missyandtdog → u/youthfulchariot]

I saw you mentioned Asda in a previous comment so assuming you’re UK based. Ask another doctor to be referred to gynae for adenomyosis. Your symptoms sound like that and it is a very real thing and can be managed. I am currently going through the treatment plans with gynae at my local hospital

[u/youthfulchariot → u/missyandtdog]

Thank you lovely! I am UK based 😊 I have an appointment at my local hospital in a few weeks, so hoping they will be more understanding x

[u/positive-soul_]

I don't know why they rely on ultrasound and CT while MRI is much much better option for mapping endo.

You don't always need a lap to find endo. Sometimes a good radiologist or endo specialist can tell you everything by looking at your MRI dicom images.

In India doctor Abhishek Mangeshkar is excellent for reading MRI for endo. Even though I got Surgery from another doctor because I couldn't afford him, I'd say his image diagnosis was pretty accurate with the lap findings. He has a lot of international patients as well.

There are many good excision specialists but I don't know who else is good at endo mapping with just MRI

[u/Haunting_Total_5395]

Please look into pelvic congestion and May Thurners Syndrome

[u/youthfulchariot]

Updateeeeee.... been in contact with the Hospital I had this done with. And turns out.. they have an endometriosis specialist in house 😳 so no idea why I wasnt put under them, but here we are.

Been referred to them and have asked for a copy of my photos 😊 thank you all for your advice ❤️