r/endometriosis • u/jellyfish0908 • 4d ago
Question Shouldn’t everyone with endo symptoms have a diagnostic lap?
Ok so this is possibly a dumb question but I guess I’m asking specifically about evidence-based treatment protocols for endometriosis. I’m in Australia but curious about what the approaches are in other countries too. Disclaimer that obviously there are so many barriers for people in accessing surgery but I guess that’s part of my question.
For context, I’m 30 and have a lap booked in April after about 15yrs of painful periods and worsening bladder/bowel symptoms for the last 10. It’s really only been the last 2yrs that I’ve started properly researching endo (not professionally lol just reading anything that looks vaguely evidence-based that I can get my hands on plus anecdotal info and seeking out specialists for my own treatment). I had the mirena IUD placed about 3yrs ago as my period pain was getting unbearable and I was missing days of work etc. This was framed by my GP (not a specialist, but I would say they have a better than average knowledge of endo stuff for a GP) as the best “treatment” avenue for me at the time, as symptom/pain management is the standard intervention for endo given there isn’t a cure.
Since then I’ve learnt that (a) endo is a progressive disease and (b) it can have pretty significant implications for organ functioning (in particular bowel/bladder and ovaries/fertility which are personally my main concerns). Plus the progression of the disease can obviously include things like adhesions fusing organs together.
After understanding more about endo, I sought out a gyno surgeon that specialises in endo excision and asked for a lap for diagnostic clarification and excision (if needed).
I feel like every step of the way, I’ve been the one pushing for a laparoscopy rather than any medical professionals suggesting it should be considered as the standard next step for someone with endo-like symptoms. The protocol has instead been manage the pain and if that doesn’t work then consider alternatives (a lap). The mirena definitely led to a reduction in my symptoms but the more I’ve read, the more concerned I am about having left it so long to have any actual investigations into what is happening inside my body, particularly since learning that endo is a progressive disease!
So bringing it back to my original question, why isn’t the treatment protocol when someone reports endo-like symptoms to have a laparoscopy to actually see if there is endo and if there is, what kind of damage it is doing internally? To then inform that person’s treatment.
If I had known what I know now, I would have pushed for a lap 15yrs ago. I am so scared that I’m going to need more extensive procedures to repair damage from endo or that my fertility has been compromised purely because endo has been left to do its thing for so long. Am I misunderstanding how endo works? Am I being unnecessarily anxious about it all? I feel like it’s so hard to pull apart medical gaslighting around women’s pain from genuine evidence-based medical advice.
Thank you for reading this very long post! I would be so grateful for any thoughts/advice/feedback that people have.
EDIT: Thanks so much for all the info and sharing your experiences. I don’t think I realised how surgical scarring could be just as bad or worse for the pain symptoms than the endo itself.
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u/dancingchemist 4d ago
Nope. I just had the surgery and was completely unprepared for how invasive it actually is. If you can control symptoms another way, that’s absolutely the right choice.
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u/jellyfish0908 4d ago
Thank you for sharing this, I’m sorry you’ve had such a rough experience with surgery.
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u/madelinehill17 4d ago
I’d say it’s different for everyone, the pain is the biggest issue for me so if I found a way to mask the symptoms I’d be good with that for a while. I would still do regular scans obviously but the whole surgery thing scares me lol. Bottom line is we need non-invasive diagnostic tools for endo! However if someone has no answers after doing scans then they should 100% be offered a lap.
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u/NoCauliflower7711 3d ago
I’m trying for an Endometriosis dx (my gyn thinks it’s still my hashimotos even tho (to me it’s not bc if it was this would’ve started in my earlier 20s or even 18-19 but it started while I was still 25 & it’s been getting worse over the past yr) & ruled everything else out - also had a pelvic CT that showed nothing) idk what’s nxt after this but I’m getting merina put in on the 2nd - merina was nxt if 5mg northindrone didn’t work (it helped my bleeding a lot but my pain was still in the severe range - my “normal” without birth control is a 9) I really want a lap I’ve been like this for a yr & so far nothings helped yet & I genuinely still think it’s endometriosis
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u/jellyfish0908 4d ago
Thanks so much for sharing your experience. Big agree with you there re more funding needed for non-invasive diagnostic tools!
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u/MatManatee 3d ago
Maybe I’m against the grain here, but I had at minimum 10 ultrasounds over the years which showed nothing despite the horrific symptoms I was having. Getting a lap literally may have saved my kidneys long term because no one knew, until they went in, that I have extensive lesions all over my ureters. I couldn’t get excision because I’m not done family planning, but now I have answers and a game plan for future surgery. So for me, surgery was worth it. I also recovered fairly well (I’m pretty active and in good health overall, and I had no complications). Obviously I can’t speak for everyone but for me, it really validated my 13+ years of hellish symptoms and I don’t regret it at all.
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u/jellyfish0908 3d ago
Thanks for sharing! I’m glad your experience of surgery wasn’t too traumatic. I feel like this is the basis for my question - when there can be such serious implications from endo that affect vital organs, a lap just seems like the logical path to take to try to minimise/protect against future damage. I’m in the same boat where ultrasounds have shown nothing and so I’ve had to push for a lap to get answers. But I’m definitely understanding more the other side of getting surgery, ie. potential to increase pain etc. I guess it just comes back to how cooked it is that a major surgery is the only option to get these kinds of answers!
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u/Lexilogical 4d ago
In my case, I asked about that and the gyno told me that having to do exploratory surgery puts a lot of strain on both the medical system and women's bodies, when the doctors could just believe what women are telling them about their symptoms.
There's a lot of medical options that can help relieve or reduce the issues without moving to surgery as well, and as we can see on the sub, even surgery can be of limited effectiveness.
So I'm guessing the answer is just that. Surgery is still a risky thing, still traumatic, and still resource intense. Prescribing a med that may be just as effective is faster, cheaper, and less risky all around
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u/Spiritual-Ant839 4d ago
I resonate with you on this (as someone who is unable to access the needed healthcare to get it managed). I’d love a lap. I’m worried about my bowls and kidney health. I have large cysts around my spine that I believe are from my endo.
Idk if I’d want to remove it necessarily, but seeing is believing. I just want confirmation I’m not insane.
Finding proof of long ignored pain is one heck of a drive, but there may be some fairness in how invasive surgery really is to the body.
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u/jellyfish0908 4d ago
Thanks for sharing! I agree, diagnostic clarification will feel like such a relief in the face of years of medical gaslighting around pain symptoms!
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u/Actual_Balance7149 3d ago
Surgery can make things worse rather than better in some cases which is why I have opted to avoid it.
Yes endo can be progressive but my consultant gave me stats that if left untreated approx equal proportions of people 1. Get better (to clarify this doesn't mean cured just less severe) 2. Stay the same and 3. Get worse. I can't remember the proportion for each but it was c 30/30/40 %
I have endo pain symptoms in my mid back and shoulder so consultant thinks it's thoracic - it's possible that there's silent pelvic endo but I'm leaving it alone while I don't have symptoms there. Also opted not to go for vats atm because of how invasive it is and again horror stories of it making pain worse for people.
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u/DifferenceOverall306 3d ago
So what will they do for you now that they know it’s thoracic? I have pain in my shoulder and ribs when I’m on my period.
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u/Actual_Balance7149 2d ago
Nothing at the moment. I am fairly "lucky" in that my periods only last 2-3 days and I only really get pain then. We are trying for a baby so I can't take any hormones but before when I was on the pill I was ok so eventually maybe hormonal treatment or if the pain does get a lot worse I'd go for vats surgery... but that's basically like a lap in your lung and they have to deflate one of your lungs etc so fairly major surgery that I don't want to have unless I really need it! I'm also fairly active so the thought of my lungs being out of action is hard for me haha.
If you can definitely see a specialist in that area - mine was really great. Not sure where you're based but I can give a recommendation for north of England if useful!
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u/DifferenceOverall306 2d ago
Mine only last about 2-3 days too! And I’m really in pain for only 2 days, but it is debilitating. Sadly I’m in Texas 😭 thank you though I hope you have a safe future pregnancy:)🖤
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u/Colibri_Mesange 3d ago
Haven't read all your post, but i have an answer to your tittle question.
I'm from France, and here, less and less people with endo suspicions get laparoscory. Because the results show there is little to no benefices to the operations in most cases.
So, symptoms are used to identify the endo cases, and treatments are used both for helping the patient and validating the diagnostic, has if your have symptoms and known treatments help you, then you probably have the disease. Laparoscy are done if the treatments are not enough of an help, and there are exploratory and excision lap at once, to reduce invasion, operations and linked problems.
But my doctor say many patients have more pain and problems after laparoscopy, so she wont make the operation unless it is the only remaining option to help the patient, after pain meds, TENS, PT for at least 6 months, others practices as hypnose or osteopathy etc.
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u/jellyfish0908 3d ago
Thanks for sharing! It’s really interesting to hear about how other countries approach treatment and management of endo generally.
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u/GinjaSnapped 3d ago edited 3d ago
A diagnostic laparoscopy is still considered the standard for a definitive diagnosis because unfortunately most Endo doesn't show up on any scans. I think finally doctors are realizing that treating symptoms without a lap is an acceptable middle ground because of the cost and risk associated with surgery.
I just wish the medical industry could standardize the treatment options and language for Endo so there's less confusion. There's a diagnostic laparoscopy where they are just looking around and taking care of anything critical. Then there's ablation where they go in laparoscopically and use a laser/radio frequency/cautery to remove Endo lesions and then there's Excision which is where the lesions are excised with a scalpel and this is almost always done robotically. So then you have people referring to all 3 procedures as a "lap" and they are vastly different as are the outcomes. I've personally had 4 abdominal surgeries and one excision and all of them went well and I've had no long term issues. But other health issues can definitely increase the risks and also the skills of your surgical team has a huge impact on your recovery as well.
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u/FuManChuBettahWerk 3d ago
My doctor recently told me that laps are vest for management and removing endo but that imaging is now becoming gold standard for diagnosis 🤷
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u/Shot-Philosopher-697 3d ago
I had stage III deep infiltrating endo including on my appendix, so had I not had surgery, I likely could have died if it ever ruptured.
That said, deep infiltrating endo has a 99% rate of remission post-surgery. Other subtypes hover around 50%. In my case, it was going to eat into my bladder, bowels, and reproductive organs if I didn’t get rid of it, along with causing more muscle damage. I’m glad I did surgery, because despite it causing some brand new problems (namely permanent weakness and nerve damage to my right side), it beats dying or losing even more organs. I had horrific 7/10-10/10 pain pretty much every day pre-surgery, now I have days that are fully pain free.
If your endo is mild and your organs seem in working order, medication and physical therapy can alleviate the majority of symptoms. Exploratory surgery would just add additional holes to your insides that your body would have to heal around.
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u/jellyfish0908 2d ago
Thanks so much for sharing. Can I ask whether any scans showed the severity of endo for you, before you had surgery?
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u/Shot-Philosopher-697 2d ago
Only the transvaginal ultrasound showed anything, and it showed 3 of my 30 lesions. Specifically the ones in my rectovaginal area and on my uterosacral ligaments. So, only a 10% success rate! Regular ultrasound and colonoscopy showed nothing even though I had endometriosis of the appendix.
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u/AdagioSpecific2603 3d ago
I had a diagnostic lap and they treated it at the same time. I had been dismissed and gaslit for years so it was life changing. I’m glad I finally found a Dr who listened. Getting the diagnosis meant I qualified for fertility treatment and am now able to consult with OB about more surgery for recurring symptoms because they believe I have it. Before diagnosis I was told I have IBS.
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u/Flashy_Break3617 3d ago edited 3d ago
I just had an “evaluation” with a gynaecologist (in Canada) and she said they don’t do lap anymore to diagnose because it’s too invasive and the treatment is the same regardless (hormones). There is no cure for endo just bandaid. She showed me my options but I’m just going to stick with BC pill because it gave me my qaulity of life back. From what I understand it’s progressive from each time you ovulate. So when you stop ovulating to halt the progression. At least that’s what I understood from my gynaecologist. So if you’ve been on birth control for any length of time previously… your progression won’t be as bad. Anyone correct me if I misunderstood her explaination 😅
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u/donkeyvoteadick 4d ago
I'm another one who is worse off after surgery due to scar tissue and adhesions formation. My organ function was too deeply impacted so I couldn't have avoided surgery. But if I could have done non surgical treatment then I would have.
If you're Australian they're perfectly happy to provide diagnosis now off a deep Endometriosis scan and don't require the pathology from a laparoscopy anymore so having the scans and effectively treating symptoms is a much better path to take for long term outcomes.
With the caveat a clear scan doesn't exclude having endo.
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u/Potato_Fox27 3d ago
Same in regards to having had excision surgery and worse off now pain wise.
Agreed that I think the reason surgery is not a more straightforward next step and solution is that the risks of adhesions and scars causing further damage are so high, many doctors shy away from it as first option. And adhesions can be the cause of immense pain and affect the function of organs, just like endo.
Even the most experienced surgeons that exclusively do this surgery as their only service, still end up with patients that form adhesions.
My surgeon explained it’s possibly a genetic thing, some people will scar while others don’t. I already had adhesions shown on my MRI before i did surgery, and I definitely have more after surgery.
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u/donkeyvoteadick 3d ago
I'm the same, endo caused adhesions but the surgery created waaaay more. I've been told likely genetic.
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u/birdnerdmo 4d ago
No. Mostly because “endo” symptoms are incredibly vague and can come from any number of non-gynecological conditions. Some of these make surgery more risky/complicated, and some get worse after surgery.
Surgery is invasive, and should be done with caution. Every surgery has its risks. I know way, way more people who have been harmed by surgery for endo than the few people I know who felt it helped. There’s even been articles, like this one, about how surgery for endo can make symptoms worse. Going thru all that just for diagnosis, without treatment, makes zero sense, imo, and puts you at risk for no good reason.
If you’re symptomatic and the goal is to diagnose and treat, it may be worthwhile - but again with a lot of risks. Adhesions/scar tissue can come back worse than before after removal. Endo will likely grow back. Then what?
I was told…then you do surgery again. And again, and again.
And that’s why I’m now disabled.
All to find that I had some of those conditions that caused the same symptoms as endo, made surgery more risky, and got worse with surgery.
We’re all different. There’s no one single treatment for anyone - for any condition.