Is a laparoscopy worthwhile?

[Ejrn]

I’m 19 years old and have been suffering with unbearable mid cycle and period pains for 5 years now. I’ve had endless hospital appointments and consultations, but this year things have gotten progressively worse.

At the beginning of July I was admitted to a&e due to being in such severe pain. I was on codeine, tramadol, morphine, gas and air all within the space of an hour, yet nothing seemed to touch my pain and I felt completely undermined by all the staff and doctors. A day later when I eventually got the pain under control I started to bleed and passed a huge lump of flesh. I immediately called over my doctor (due to being incredibly disturbed) and asked for it to be looked into, but once again it went completely unacknowledged. Although in the past my scans have shown cysts, by the time I was finally given one there was nothing left to show up and I was told to leave the hospital with no explanations and without even seeing a gynaecologist.

Finally, this month I got given a date for my laparoscopy which was meant to be going ahead today. However after hours of paperwork and waiting in pain, my surgeons encouraged me not to go ahead with it and instead keep on with a new contraceptive pill. I was distraught to hve to make the decision to cancel and feel like I’ve taken ten steps backwards after waiting for such a long time for my opp. My pain is becoming so chronic and I’m starting to lose hope of ever feeling better.

I’m now looking for advice as to whether laparoscopies have actually helped anyone improve (instead of only giving a diagnosis) or whether I’m better off waiting and trying to deal with the symptoms on my own. I was also wondering whether anyone has had something similar with passing flesh?

I’m sorry for such a long post, just feeling let down and unsure of where to turn to next.

[weekari]

Hello

What a lot for you to be dealing with! I hope you've got some good supports around you?

I suspect your age will play a big factor in the Dr's not wanting to operate. Each time you have surgery, you create scaring inside (lesions), which can impact fertility and can cause more pain too. I'm sure they'll be wanting to delay surgery as long as possible for you. This obviously doesn't help with your current awful symptoms.

I think whether a lap is worthwhile is a hard question to answer when you don't really know the extent of what's going on inside with the endo (or whatever else is causing all of this for you). Obviously a lap would give a clearer indication of this but it's not the only way. Endo can show up on an mri and I would wonder if it could be an option to have an mri to see if there's any endo visible (more superficial endo might not show on an mri but deep endo will) and where it is. If its deep & severe (in lots of places) then it really might be worthwhile getting as much removed and accepting the risks of lesions. But if there's not much to see, then at least you'll know that if you do have endo, it's not extreme (although it's clearly extremely impacting your wellbeing) and it may then be better to try find some ways to cope (there are loads of amazing alternative therapies as well as medical approaches).

I was actually diagnosed with severe endo through an mri (through orthopaedics for my back pain) I've had to have another more endo specific mri which they're using to decide on what I'll need in surgery (it is affecting my bowel so they are deciding if I'll need a bowel specialist).

I hope this helps. You have loads of support on here if you need it. Xx

[weekari in reply to weekari]

I wanted to add... I actually had a lap 2 years ago which was clear so essentially they've diagnosed my severe endo through an mri.

Xx

[Ejrn in reply to weekari]

Thank you so much for your reply, incredibly useful, and an mri definitely sounds worth looking into. My doctors explained all of the risks with the scar tissue and lesions related to the surgery and it does make sense to wait. Just feel like there’s never a definitive solution! But at least the mri would be far less invasive and still potentially offer a diagnosis X thanks so much again X

[princessk09]

Hey I’m 19 and just had my lap today. My gynae found a large chocolate cyst on my ovary and some endo spread around my pelvis.

I can’t say whether it’s helped me yet until I am fully healed inside but a lap is worth it to get answers and it can be treated the same day if they can.

Being young they try not to operate as it can cause complications in the future. They only decided with me as nothing was working and my sport career was on the line because of the pain xx

[Ejrn in reply to princessk09]

I’m so sorry that you’re suffering too, and hope you recover quickly from your surgery. It’s reassuring to hear from someone my age that’s experiencing something similar! And probably my biggest frustration is how much it’s affecting my studying and career prospects so can completely understand how much impact it must have on your sports. Keep us updated on your recovery! Would be interested to see whether it eases your symptoms. Thank you so much for the response Xxx

[princessk09 in reply to Ejrn]

I’ll do an update once I’ve seen my gynae in 6-8 weeks. It is honestly so frustrating and took me a year to get diagnosed. You just have to keep pushing your doctors/ gynae

I went to a private consultation at spire which got things going forward but I had my lap on the nhs and the staff were equally as amazing xxx

[Bdgjdjd]

I don’t suggest laproscopy it is very very bad for ovarian reserve and i the future your amh will be so low

And it will affect the ivf and iui

Lap to treat adhesions it will be great but lap on ovaries is a terrible decision

[princessk09 in reply to Bdgjdjd]

I had my lap on my ovaries yesterday and I’m 19. They didn’t say anything about my ovary being damage by the lap though xx

[Bdgjdjd in reply to princessk09]

Me too they didn’t say anything about it i had my lap 4 years ago when i was 16 years old.

Last week i saw a doctor video said if the cyst is too huge mabye it is worth to have lap for it but if you want to get pregnant removing the cyst will not change anything especially if you want to have iui or ivf

Amh is worse than endometriosis because it affects the ivf and iui not just trying naturally

For your age I don’t think the surgery affected you a lot you are still young and your amh could be great

But if you want to get pregnant I recommend to start when you are young

[Hidden]

I'd say yes. I am still undiagnosed, got my lap booked for September. I have tried everything to get answers and I just think if you are worrying and feel like you have been for a long time then you may be better off finding out. So even if it says no endo... Then you have peace of mind that it's not that.

However, I would say speak to specialist and do your research otherwise you might end up being told no endo when there is. This happens quite a lot I believe and then tou could need a further lap to properly be diagnosed (if it is actually endo!!)

[hannah11]

You poor thing that sounds really horrific. It's bad enough having such intense symptoms but to not be taken seriously and have no support during that experience as well?! I'm so so sorry you had to go through all that.

Yes, doctors do like to put off surgery for as long as possible when you're young (I am 23 and have been through this same thing too) but if your quality of life is so bad because of the pain and pills are not helping then it makes sense to pursue it. But only you (with the help of a doctor you trust) can make that call.

Laps can be great for managing pain IF you have the right surgeon. By this I mean they are experienced in removing endo in the correct ways (properly excising the disease) and they don't just open you up, say 'yep, that looks like endo' without removing it. Because otherwise, what is the point in going through all that trauma?

I would advise reading up on the surgeon and hearing other people's experiences. Maybe even posting on fb groups asking for reviews. Do they have experience dealing with deep infiltrating disease as well as to superficial disease? How do they remove it? Do they have on call bowel specialists etc for if they discover the disease has affected other organs? What is their success rate? What is their recurrence rate? What support do they offer after surgery?

If you read or hear about anything remotely dodgy with this doctor MOVE ON. It is better to be safe than sorry. It is better to find a surgeon you completely trust, who respects you and takes you seriously and who involves you in your care and doesn't make decisions on your behalf. It is not ok for a doctor to dictate what you should do just because you are young, you should be in charge of your treatment.

I wish you so much luck with your treatment and I hope you find relief soon, weather it be through surgery or hormonal pain management.

If you want to talk more or would like me to send you some resources that I have found helpful, PM me

Love,

Hannah xoxo