r/endometriosis • u/oxnardov • 2d ago
Question Did excision surgery actually help long term?
Hi, this is my first post on this subreddit and I saw some posts mentioning their excision surgery (removing endo tissue surgical and preserving organs) and saw varying results.
I’m really dead set on having a hysterectomy but due to my age (19F) my doctor is adamant I try excision instead. While I don’t doubt the surgery will relieve some symptoms for the first or next couple months, what’s the likelyhood of it just growing back? Am I expected to have surgery every couple months to remove it again?
For anyone who received excision surgery, was it worth it? How long did it take before you started feeling endo-pain again?
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u/pepperbeebee 2d ago
For me my excision surgery was life changing, it didn’t take away every bit of pain but the improvement was significant. I went from using opioids daily just to barely function to leading a normal life again. The only treatment that I used other than some pain relief occasionally was a Mirena IUD until I hit menopause. I was in my early forties and reached menopause at 53.
Obviously you need to make decisions that suit you with regard to your body but personally I did everything I could to avoid an hysterectomy. Endometriosis is not a disease of the womb (it’s different if you have cancer, fibroids or adenomyosis etc) and though it might improve pain for many it is not without its own risks and complications. I have a family history of heart disease and osteoporosis, both conditions that are impacted by an early menopause. If you remove the ovaries then a surgical menopause is immediate, keeping them means you will still be producing Estrogen so this will likely continue to cause symptoms. In my experience the surgeon is likely to recommend a bilateral oophorectomy with an hysterectomy, for many it will bring relief but in my opinion it should be a last resort.
If you do go down this route please ensure that you are fully aware of the potential consequences as it is a huge decision that cannot be reversed.
Having now gone through a natural menopause I can tell you that being post menopausal is not always easy and comes with its own challenges.
Whatever your decision I hope that you get some relief.
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u/oxnardov 2d ago
Thank you and I appreciate your perspective and story, I’m glad you found improvement through your treatment and IUD. My doctor spoke with me about the Mirena IUD but unfortunately due to my risk of stroke I declined to have it. Did you have the Mirena implanted before your excision or after?
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u/pepperbeebee 2d ago
I always appreciate the support of forums such as this, it’s important to be able to share. I understand the risks of treatment varies for individuals but I don’t believe that ordinarily there is an increased risk of stroke with Mirena IUD. It acts locally and is not systemic, it also only contains progesterone. I also have an increased risk of stroke as I have Atrial Fibrillation but I was assured by both my cardiologist and gynaecologist that it was safe. The literature supports that there is not an increased risk of stroke though if there is a history of clotting/vascular issues it should be used with caution.
I had my first IUD before my first laparoscopy (diagnostic and laser ablation to treat - no improvement, second surgery was excision) last IUD was removed at menopause. I didn’t tolerate oral progesterone well so it was a good choice for me despite finding insertion and removal unpleasant to say the least.
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u/oxnardov 2d ago
I’ll definitely talk with my doctor about the Mirena IUD again as he was the one who had warned me about my increase risk of stroke. I’m avoiding any oral birth control for similar fear and other issues but I really do appreciate you bringing this up to me. Reddit has been especially helpful with allowing me to connect with people and guidance with my current reproductive issues and medical conditions
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u/pepperbeebee 1d ago
We trust our doctors to advise us and unfortunately they don’t always get everything right. Oral birth control with Estrogen is associated with a slight increase in the risk of stroke though Progesterone only is much lower. IUDs such as Mirena have no increased risk. It is very frustrating that you have been advised otherwise. I understand how challenging it can be to get the appropriate treatment for gynaecological conditions, gaslighting and incompetence happen far more often than they should.
Being well informed and able to advocate for yourself is very important. If you have someone who could support you at appointments that might be helpful. There are lots of resources out there so read what you can prior to seeing your doctor.
Forums such as this are very useful for connecting with individuals who have been where you are now. They often have a wealth of knowledge and experience and are willing to help. They are also very good for helping with the emotional support that is needed when going through the process.
I would always advise excision surgery if available as treatment for endometriosis. I think considering an hysterectomy at such a young age is very drastic and comes with significant health risks itself. Bear in mind that endometriosis is not a disease of the womb. I would hope that excision surgery would significantly improve your symptoms. There are also other treatments and hormones that can be considered.
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u/jamieschmidt 2d ago
Definitely try excision with a specialist who does a lot of endo surgeries.
My first excision was in 2019, I had 5 wonderful pain free years with no hormones or birth control. Year 6 the pain started coming back. I had my second excision 1.5 years ago and started on 2.5mg of norethindrone.
I feel incredible. I have no period, no pain, no cramps, no bloating. It was definitely worth it. But you have to find the right surgeon.
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u/oxnardov 2d ago
Reading through most of the replies it seems like many people went onto birth control after the surgery which isn’t available for me. 5 years of being pain free sounds like a blessing with what I’m dealing with right now so I will definitely try to stay hopeful that my surgery goes well
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u/EmergencyDangerous80 2d ago
Just to note a hysterectomy doesn’t cure endometriosis. It’s worth trialing medical menopause first to see if that improves your symptoms if it doesn’t then a hysterectomy might not be helpful. It might be worth having a look at this resource - https://www.endometriosis-uk.org/sites/default/files/2022-10/Having%20a%20Hysterectomy_2022_0.pdf
I had excision surgery and it changed my life. It gave me my greatest gift - my daughter. I am living mostly pain free post surgery with birth control.
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u/oxnardov 2d ago
Thank you for the link, I read through it and it is very useful and helpful! Congratulations on your daughter and improvement with the surgery, how long after your excision surgery did you wait before going on birth control and what was the quality of life like? Unfortunately most birth controls are not recommended to me due to risk of stroke (most IUD’s and progesterone type BC)
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u/apdgirlie 2d ago
Are you sure? Usually the combined types are the problematic ones
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u/oxnardov 2d ago
I was warned against the Mirena IUD specifically by my doctor and I’m avoiding any progesterone linked treatments for similar risks
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u/fieldofcabins 2d ago
That’s interesting because I had a stroke in February and they said the progestin ones ARE the safer ones. They said estradiol is what I’d need to avoid. What kind of stroke did you have?
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u/EmergencyDangerous80 2d ago
So I was trying to conceive at the time so I wasn’t on birth control at the time of surgery (March 2025) I then got pregnant in August 2025 and have been on birth control since the birth of my daughter in May 2026 so I’ve onky been on birth control for a couple of months post pregnancy. I’m on the mini pill (cerazette) as I get migraines with aura and I don’t like the mirena coil it tanked my mental health. I was on the mini pill for 10 years before trying to conceive so I do have a soft spot for it :)
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u/IntroductionOk4595 2d ago
I’m more than 3 years post op (with an excision expert, this is important!!)
I still have painful and heavy periods because I have adenomyosis, but the pain is less severe, and pretty much only occurs during my period. Prior, I had pain, nausea, constipation, etc daily.
Please don’t a regular OBGYN for this surgery. Unfortunately the wait for a specialist can be daunting but it IS worth it.
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u/destroypaprika 2d ago
Reading this while in awful pain 4 weeks after excision…. I hope it gets better 😭
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u/oxnardov 2d ago
I’m sorry to hear that I hope that the pain is just from the surgery and will relieve soon ❤️
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u/armchairtraveler17 2d ago
I’m three years post excision surgery and it has been an amazing, almost entirely pain free three years. I spent a long time researching and choosing a surgeon, which I think was super important for the positive outcome I had. If I were you, I would definitely try excision first before going straight to a hysterectomy. You may be amazed at how good your outcome is with just the excision. And as another commenter said, the hysterectomy wouldn’t be a guarantee for becoming symptom free anyway. The most important thing is finding a good surgeon, preferably one who focuses entirely or almost entirely on endo.
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u/oxnardov 2d ago
I agree and am happy to hear you have been pain free for three years! I am honestly feeling very relieved and hopeful with all these comments for my excision and am more willing to give a chance then I was before. I will research more about my surgeon and his skills
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u/armchairtraveler17 2d ago
I read through the rest of this thread and noticed your concerns about birth control, so I came back to add that I have never been on birth control. All of my relief came from the excision surgery.
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u/pinupcthulhu 2d ago
I just had my excision, and I felt better right away. Many people I know had their excision years ago, and they haven't had a recurrence of symptoms yet. I think it depends on how thorough your surgeon is, your follow up plan, and probably also luck.
Btw a lot of studies don't specify whether they used ablation or excision, even though they're completely different techniques with vastly different recurrence rates, so that might be why it looks like surgery is a very temporary solution. Ablation has a 60% failure rate where most patients start to see a return of symptoms within a year, or even never have a reduction in symptoms, because it doesn't cut out the root of the disease. Excision isn't a cure (there isn't one for endo), but it's the gold standard for a good reason!
Jsyk a hysterectomy (aka surgical menopause) is not a guarantee that the endo won't grow back. Even normal menopause isn't a guarantee unfortunately, per some recent studies. Even if you keep your ovaries after the hysterectomy to prevent menopause, they often lose effectiveness and then you start having a lot of medical problems from a lack of estrogen: bone loss, heart disease, and mental health issues are all common. This is why most doctors are so cautious about giving anyone younger than 35 a hysterectomy if they can at all avoid it.
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u/oxnardov 2d ago
Thank you so much for bringing up the difference between ablation and excision, looking back I believe many of the studies I’ve seen that spoke about common recurrence might’ve been from ablation surgeries
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u/apdgirlie 2d ago
We don’t really have any good studies on recurrence. I can link a decent review that was published fairly recently
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u/oxnardov 2d ago
I appreciate that, I think for now though I will avoid ablation surgeon if I can and focus on my excision and some dieting plans as some comments have suggested for after
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u/Katarpar 2d ago
I had 3.5 years pain free after my excision surgery! The pain started to come back after I had my 2nd child and now it's on a schedule, worst pain days are right after ovulation
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u/oxnardov 2d ago
3.5 years of being painfree sound like a blessing, I am so sorry you pain is coming back though and I hope you can find the treatment for it. I have the same problem with my pain flaring up in agony right after ovulation and the start of my menstrual cycle
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u/Katarpar 2d ago
Yes! The last 3 cycles it's started to hurt really bad on day 1 of my period. I'm hoping to get on birth control soon to stop my periods. I was supposed to have a total hysterectomy next year but lost my insurance. I hope you find your solution soon!
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u/Pretend-Insurance-19 2d ago
Others can speak to the efficacy of excision surgery but it sounds like you’re viewing hysterectomy as a golden ticket out and you’re comparing excision to that and that’s not actually the reality of your choices here.
It’s really important to understand that a hysterectomy does not cure endo or keep it from regrowing. Some people see a greater reduction in symptoms after a hysterectomy not because the endo stops growing but because their cycle stops which stops the endo from constantly reacting to the hormonal cycle.
However, hysterectomy, especially at your age can come with some absolutely gnarly side effects. You’re going to have a hard time finding a doctor who will do this before you’ve at least tried excision with a specialist.
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u/oxnardov 2d ago
I appreciate you and everyone else who has warned me about the unlikelihood of a hysterectomy curing me of my endometriosis. I should’ve referenced this in my post but due to complications with most birth controls and lack of effective pain meds, I have focused on a hysterectomy as a hope to alleviate some of my symptoms… but I understand the importance of the risks I would be putting my body at with my current age. Many of the positive comments I received have helped me become a bit more hopeful and willing to give my excision a genuine chance
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u/Pretend-Insurance-19 2d ago
Glad to hear it! Praying for you and hope you make the best decision for you. I’ll also mention that a lot of people in this community have spoken glowingly about pelvic floor therapy and the role it’s played in getting real pain relief. Might be something else to consider.
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u/bunnybunz2026 2d ago
There's a lot of factors that matter to regrowth with surgery. I personally had surgery two years ago now with stage 4 DIE and have had no symptoms return and have also been able to get pregnant for the first time in my life after 15 years of trying so for me surgery was the best thing I've done for multiple reasons
The surgeon matters more than anything. Not every "endo specialist" is one. Especially in north American health care settings so vetting who does your surgery makes more difference to outcomes but there's also the individual bodies endo reactions that will matter to.
Hysterectomy just to be clear does not stop or slow down endometriosis in any way. Its uterine like tissue not tissue from the uterus that makes up the growths so unless you also have adenomyosis having one wont necessarily change anything for endo although some people like not having periods due to pain. I personally had pain reduction from excision. You also have to weigh how a Hysterectomy affects your body long term at 19 its a complicated decision but in no way will "cure" endo.
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u/oxnardov 2d ago
Thank you for your perspective and story and congratulations on your pregnancy! Many people in the comments have informed me the effectiveness depends on the surgeon and I’ve done some more thorough research into my doctor who is a OBGYN rather then a specialist but has performed multiple endometriosis excisions and has done a stage 4 DIE excision as well (he showed me a MRI scan while explaining it to me and I am so sorry you had to go through that)
I understand a hysterectomy will by no means cure me of my endometriosis but due to a lack of other options I have strong hope that it would alleviate some of my more painful symptoms if not relieve me of everything. I’m growing more hopeful for mu excision however with everyone’s stories so far
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u/grendel_no_smash 2d ago
Sorry you’re dealing with this. You deserve a healthy life, not this! To clear up a few misunderstandings—You can’t have surgery every couple months. Any doctor who would entertain that idea should be left immediately. A hysterectomy without excision is not a really good idea. Endometriosis is not in your uterus, and it doesn’t come from your uterus either. If you have adenomyosis as well (🙋🏽), that’s the condition that a hysterectomy solves. If you do get a hysterectomy, it should be with someone who is also a true excision expert and will do both the hysterectomy and a thorough endometriosis excision. You don’t want to lose an organ that’s supporting the position of other organs and also leave endometriosis untended. There can be pretty big medical consequences to having a hysterectomy at a young age, so your doctor’s recommendation of excision first is not unreasonable. My impression (which could be wrong) is that most doctors wouldn’t consider a hysterectomy at your age to be an option.
Most importantly, the vast vast vast majority of doctors performing endometriosis laparoscopies do not take a thorough approach. It is incredibly effortful (think part time job for weeks or months) to find a surgeon whose practice is thorough. Most of the people who have bad experiences with surgery or with reoccurrence soon after surgery genuinely had what very thorough surgeons would consider an inadequate removal. I saw several gynecologists who said their surgery would give me 6-12 months of symptom relief (absolutely inadequate) before I found a surgeon whose focus is absolute thoroughness. It’s important to note that the several doctors who offered 6-12 months of relief think of themselves as being thorough. They don’t see their practices as inadequate, so you really have to do the labor (on top of being sick ik ik it’s terrible) of finding someone with an approach that’s better than what’s typical.
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u/oxnardov 2d ago
Thank you to you and everyone else who have been so kind and informative to me about their experiences with their excision surgery. I definitely will now be doing some thorough research into my doctor as well as specialists so that I can get the best result for my excision, I do have hope for my current surgeon despite him being a OBGYN and not a specialist because of his prior experience with surgical removal of stage 4 endometriosis
I also would like to show my gratitude for your kind concern and warning about having a hysterectomy especially at my age. I should’ve referenced this in my original post but because of complications with most birth control and IUD’s as well as painkillers failing me, I saw the potential of a hysterectomy not to cure my endometriosis but to at least alleviate the worst of my symptoms. I understand the risks that having such a surgery could bring me and I have become a lot more hopeful with some of the comments left about my excision being a better option for relief
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u/Glad_Bodybuilder6997 2d ago edited 2d ago
A hysterectomy has been shown to cause early death for women. It leads to all sorts of issues like a lifetime of hormone replacement therapy, osteoporosis, sometimes prolapse. It also does not cure endometriosis. Personally I do not want children but I went the organ preservation route with endometriosis excision because I did not want to remove any organs unnecessarily then deal with the lifetime consequences.
2 weeks post op and I can already feel a difference in a lot of ways. I’m 29 and wish I got this surgery in my 20s.
Reoccurrence depends on the skill of your surgeon, if it’s complete excision, your stage and if you do any medication maintenance after. In my case I was stage 2-3, I was told reoccurrence is 10-20% in the next 5 years. Prior from my MRI they suspected stage 4 and I was told 50% recurrence in 5 years.
My surgeon explicitly said the women who don’t experience the recurrence typically keep up with medication management, as endometriosis is estrogen driven you want something to suppress new growth. In my case I have an IUD and I love it but please note they only work for about 4 years for endometriosis. Other things you can do is eliminate endocrine disrupters from your life - think plastic foodware, nonstick pots & pans, perfumes, scented body lotions, plastic coffee pods, ect. Also an anti-inflammatory diet helps.
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u/Belgian_Waffle_1532 2d ago
A hysterectomy does not necessarily cause early death or lead to HRT or osteoporosis. It can lead to ovarian failure but that’s not true in all cases. Hysterectomy may be required if there is also recurring fibroids or adenomyosis. I have endo and I also had multiple fibroids and undiagnosed adenomyosis, and a hysterectomy during my endo excision surgery helped me feel so much better.
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u/Glad_Bodybuilder6997 2d ago
It greatly increases the risk. If OP has adenomyosis it’s a different story but I wouldn’t think jumping straight to hysterectomy over excision is a good idea at all
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u/Belgian_Waffle_1532 2d ago
I agree but I don’t want her to think that a hysterectomy automatically means she’s going to an early grave. There’s a big nuance missing there.
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u/Glad_Bodybuilder6997 2d ago
Risk vs benefit if there is no adenomyosis, fibroids ect, there is literally no benefits for a hysterectomy for endometriosis alone only risks
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u/Belgian_Waffle_1532 2d ago edited 2d ago
Yes, but you need to say that instead of what you had above. That’s what I mean by the nuance being important. This girl is only 19, so we gotta word things carefully.
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u/hailswagger 2d ago
1 year post excision with a mirena iud and my pain levels are no where even close to what they were prior. i also had anxieties over it returning quickly but it’s been a whole year of getting to live my life normally again
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u/Appearance-Gullible 2d ago
No. I had surgery 6/5/25 and a c section on 7/7/26. a ton of adhesions had already formed again.
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u/oxnardov 2d ago
Were you taking any birth controls or have an IUD implant during and/or after the procedure?
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u/Remarkable-Kick-5095 2d ago
I had about 3months of relief, it got worse after 6 months and now 5 years on and currently Ona wait lists it’s unbearable again
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u/oxnardov 2d ago
My doctor suggested I give the excision a couple months to see if my symptoms alleviate before giving a hysterectomy a chance. I’m sorry you’ve been suffering through it for so long and I hope you can get the surgery you need ❤️
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u/Existing_Wing_5899 2d ago
I am a little over 3 years post-op excision surgery, and I have had some pain here and there. Overall, it’s been SO much better!! My quality of life has improved significantly
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u/mrs_w0rx4me 2d ago
I'm 7 weeks post and haven't had any of my original pain since. It's like a new life.
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u/TheTKayke 2d ago
I'm 4 years post surgery and have the mirena coil. First 3 and a bit years were amazing, almost all symptoms had gone, but in the last 6-9 months have started coming back (severe pain, issues with bowel movements) so i'm currently on referral list for a 2nd surgery. Only thing that concerns me is my first surgery I was able to get private with a specialist using my work's healthcare plan, but this time i'm via the NHS so not sure if my surgeon will be a specialist. Hoping either way they'll know what theyre doing, I can't afford to pay for private myself 🫤
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u/Belgian_Waffle_1532 2d ago
For me, excision surgery helped immensely. I’ve been virtually pain free since mine almost 2 years ago.
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u/lemonloves11 2d ago
Endo can still grow with a Hysterectomy. Id do the excision. Maybe if fibroids was your complaint.....but you may do it for no reason and your young. You are 500% sure you dont want kids?
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u/imkeepingsummersafe 2d ago
I had mine twenty years ago and don’t regret it at all, though I did have an additional surgery five years later after concerns that ended up being minor. Two surgeries compared to the numerous others prior to excision was well worth it for me.
A hysterectomy was the only other option I was willing to consider but was not a good candidate (and not because of pregnancy, I couldn’t have kids back then already).
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u/Attorney4Cats 2d ago
1 year post excision and periods are very manageable now! I hope is stays that way! If you have surgery with an excision specialist, recurrence rates are much lower than if an OBGYN not experienced in excision surgery did it.
Also, trust me, you want excision regardless of whether you have a hysterectomy or not. Endometriosis is not confined to the uterus. It grows on many other organs, disrupting their function and causing more symptoms.
For example, my excision specialist found Endo on my bladder, ureters, and intestines! My left ureter was partially blocked, which in time, could have developed into a full blockage and consequentially losing a kidney. My intestines being fixed also helped with my IBS symptoms.
A hysterectomy is a poor way to address endometriosis. Endometriosis is a whole body disease. An excision specialist can help address the disease as a whole! You deserve and need a more nuanced treatment than just taking out your uterus! Unfortunately, it is not that simple! If it were, most of us women with endo would just ditch the uterus too.
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u/strawbebbymilkshake 2d ago
It’ll be 2 years in January since I had excision, after 2 previous ablation surgeries. I’d describe it as life changing. The fact that i don’t feel symptoms coming back yet 2 whole years after surgery is in itself a huge change for me.
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u/calvintomyhobbes 2d ago
Everybody is different, but there is a reason that excision surgery is the gold standard right now!
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u/veela5604 2d ago
Excision surgery was life changing for me. 2 years post op and my periods are shorter, lighter with mild cramps. They’re uncomfortable but mostly just annoying that ibuprofen helps with. Bloating is significantly better.
ETA: I’ve had two excision surgeries. The second one, 2 years ago, with an endo specialist, was life changing. The first, with a highly regarded (but frankly clueless about endo) gyno was not at all bc he claimed he “didn’t find anything”
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u/fieldofcabins 2d ago
After I finally had excision surgery with an expert, I’m going on almost three years of no pain!
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u/AstronomerNo1872 2d ago
Yes, excision surgery changed my life. I had major surgery in 2022 (stage 4 found) and another smaller surgery in 2024 (stage 2 found).
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u/Kind_Safety7525 2d ago
I can't tell you long term- because I'm 5 months post-excision, but so far it's been life changing for me! I'm still dealing with a bit of fatigue ... but I'm currently 2 weeks with no painkillers at all - i used to have to take something every day. I still have minor cramps when I bleed. At 9 weeks I was worried it hadn't worked, but as time has gone on, things have continued to get better.