leaving endometriosis alone

[Bondi64]

interested to hear from women what advice they have recieved if they didnt want surgery and just left endometriosis alone (simple pain managed)

Are there risks to health, getting worse, affecting other organs? Thanks

[Lindle]

What stage/severity are you?

[Malachitegoose]

I have pretty much decided to do this. I discussed it with the endo specialist nurse this week. I have never been told I have a particular stage or severity of endo and I'm not sure there is any guidance staying that endo specialists in the UK are supposed to use these terms, particularly as a woman with supposedly very little endo could have a lot of pain and impact on their life whilst someone with severe endo seen during laparoscopy may have no symptoms. Also there is no proof that surgery is the solution at the moment in terms of "fixing" endo. Also some guidance says a third of women get better by themselves.

So pain management and lifestyle changes are what I am choosing to focus on whilst sitting on the tears long NHS waiting list for surgery that I probably won't have. I have reduced gluten and was already low dairy. I am waiting to have a first appointment with NHS dietitian after GP referred me on my request. I am waiting to see NHS pelvic physio after endo nurse agreeing to refer me. I use naproxen and cocodamol to manage pain with omeprazole and occasional amitriptyline if I can't sleep. I am trying to increase my time outdoors in nature and physically active. I didn't have any severe pain symptoms before I began working in the NHS full time during COVID. Didn't know I had endo, though I had low level symptoms my whole adult life. I mostly only worked part time outdoors in nature and was very active. I have always eaten whole food, non-processed, mostly plant-based diet.

[Lindle]

Treatment is based on pain so at one end of the spectrum someone with asymptomatic endo found incidentally would not be operated on as it would be unethical, while someone with severe debilitating pain would usually see it as not really having any other option. It is those somewhere in the middle who are often in a dilemma who can manage their pain as it is a decision between quality of life now versus risk of surgery.

But it is usually best to know what stage/severity it is and then considering monitoring it over time with scans if choosing not to have surgery for severe endo as it could risk irreversible organ damage if left.

[Salamander88]

My understanding is that endometriosis will often tend to progress (at least for many women, maybe not everyone) over time as new lesions/deposits form, which pain relief won't change whereas I think some(/maybe most?) researchers think that suppressing your monthly cycle e.g. with the mirena coil or the right kind of hormonal contraception, could help slow it down. Though of course surgery is the only thing that can remove any lesions already there. From my reading, we can have too much oestrogen and too little progesterone with endo, making symptoms etc worse (see for e.g. healthline.com/health/endom... so progesterone-based contraceptives can often be particularly useful to rebalance that.But of course it all depends how manageable it is for you with just pain relief alone, and on your other priorities and whether hormones/contraception are something that make sense for you, what you see the pros and cons of different options as being etc- definitely worth talking through with a specialist if possible so that at least you have all the relevant info to help you.

For me I would say that contraception has definitely helped to manage my symptoms and I would guess probably to delay progression in terms of the number of lesions - though of course no way to know for sure.

Good luck!

[Username12345678]

I had a laproscopy in 2015 following an emergency appendectomy where stage 3 endo was discovered (and was crushing my appendix). I wasn’t given much info afterwards, and was only given the option of a mirena which I declined. I had a couple of symptom free years but then the pain came back (with a vengeance!) I tried various treatment options (mirena, Prostap) and finally had a total hysterectomy in January. The best thing I ever did! I had endo and adeno.

[Strongspirit7]

Hi, I'm glad you asked this question as I had thought the same thing and was wondering if there were positive stories of cases where and operation was not needed. Reading all the story of operations not being successful or complications post op are making me nervous. I try to manage the pain flare ups and keep active which I will try and increase. I just worry if it's left it could cause further damage to organs and cysts on ovaries. It's severe endometriosis currently but on waiting list for coil change and surgery. You worry will you be worse off having an op and possibly complications or leave it and it cause more damage! It would be nice instead of being asked would you like to remain on the list to being told what the best advice would be in your situation. Im now thinking I might prefer my coil changed prior to my operation as I don't know when an operation date might become available because I am managing ok currently and others are in far worse pain.Good luck with your decision ☺️

[Bondi64 in reply to Strongspirit7]

Thanks, yes i have lots of questions similar to you which i intend to take to the consultant in November. For now I've been told take pill back to back to see if theres any pain. Im also trying to adjust my diet to try and be ‘anti inflammatory’ as possible

Im stage 4 and am trying to lead a healthy/pain free life without surgery but like you have question about speed of growth, does it affect my bowels as suspected on my mri, quality of life etc

Will keep you posted as to what is said at my nov consultation.

[Strongspirit7 in reply to Bondi64]

Yes similar to you I have severe endo but managing ok. Certain times can be very challenging and exhausting and painful but it passes. I think I would still have the operation as it is affecting my bowels and need cysts removing. Its just scary reading stories of operations that have not gone well! Good luck for November 😊

[Fipp]

Hiya . Thank you for asking this question- one I struggle with a lot also. I keep changing my mind as I wait for the lap… I can manage it/ it’s not that bad- I don’t know what it feels like to not feel unwell though and can’t always discern between fibro and other auto immune symptoms/ previous peri meno. It’s like no one will help me join up the dots so I manage symptoms for years now- perhaps I would be anew person if they found and removed but am so used to feeling this way.I have had adenomyosis diagnosed after a scan for other but even here I felt it was played down and years of worse pain before meno I just struggled on- wrecked my life tbh. Now I have stopped bleeding on hrt I ‘m really confused againand don’t find even the endo consultant( only a few telephone appointments ) guides me .. it’s almost like I have to figure out if I’m bad enough to warrant it and she will go with what I say or maybe I get put back on list always as non priority for her list as been 2.5 years wait now.

My strategy is when I get to next appointment see where I am then/ diet / a mental log as best as I can’t get log together and keep them up anymore after years of no one taking much interest in them and gaslighting my mental health!

Wishing you all the best

[Wifecll]

Ive had severe pain for 7 years. Nothing was seen on examination and xray. Insisted on surgery. Took both ovaries out. Almost painfree. Had all my pain on my left ovary. Loads of burst cyst over the 7 years. Go with your gutfeeling!!!New life for me now! Energy is back!

[Hidden]

I had no choice with the first operation as it was pressing on my bladder and I have no choice with this operation as everything by my womb is a mess.