hi everyone, I have just received an endometriosis diagnosis via MRI. My doctor is really pushing for surgery. I’m noticing that there is a lot of info about surgery and stories from people who have had it (not always good, it seems that often times the surgery causes more issues than it solves). But I don’t seem to hear or see anything from anyone who has made the decision (perhaps controversial) to turn surgery down. I’m wondering has anyone here made the choice NOT to have surgery? How has that been for you? How has your condition progressed? Do you feel like you made the right choice, or not? I feel so lost and confused at the moment, like I’m damned if I do and damned if I don’t. I’m just so worried that the surgery could make things worse or cause damage that effects my ability to have children (we are keen to start trying to conceive soon). Iv lived with the pain since my periods started and whilst it’s horrific during my period, and I am now starting to get some other symptoms outside of my period. In a messed up way that’s my normal (as rubbish as it is) in some ways it’s manageable, but what I couldn’t handle is having a surgery that then makes the pain any worse than it already is. I worry that it could go from bad but manageable-ish to unmanageable and my life be completely destroyed. But then I worry if I don’t have the surgery now that it could progress and get worse and out of hand/unmanageable anyway!
Thanks everyone.
Emily xx
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Hi Emily, Only you are in that position to make the call for no surgery/surgery. We all have different experiences of this condition, some beneficial and some not so.
I had surgery last year to remove stage 4 endo, extensive lesions and endometriomas. Unfortunately, it returned within 5 months and symptoms were no different than before. My surgeon has since offered a full hysterectomy for which I've declined. As you say, it's a catch 22. Will it help or will it make things worse. Given it returned so soon, I've opted to manage my symptoms as best as possible as it's became the 'new normal'
I have had endless years of chronic pain from various other conditions that I'm not wanting to add to further. I hate that there is no current cure for this horrific disease and how badly it impacts other females 😔
What I would say is that if you’re an NHS patient, the gynaecologist wouldn’t be “pushing” surgery unless they thought it likely beneficial to you. I see so many women who are denied surgery on the NHS and I think they are careful to only offer to those who they see have a strong case for benefit.
Also I massively regret not having surgery before my 3 failed IVF cycles. I’m now 3+ years older than when I started that journey and my chance of conceiving lower and lower. I also had to pay privately then as if I’d waited for NHS again I would have probably been beyond any chance of conceiving.
My surgery experience so far has been positive. I had severe rectovaginal endometriosis and my quality of life is VASTLY improved right now post op. I felt I was barely living before that with 75% of the month in pain and having awful bowel problems etc. I was so worried going into it so I get your worry. A major push for me was that I had two second opinions that the recurrent implantation failure of our top quality embryos was likely related to the endo as well.
As purplestar said only you can make the call unfortunately, but as you’re doing, look at things from every angle before making a decision. I hope things become clear for you. Xx
Hi Emily, so far I haven’t had surgery. My endometriosis was diagnosed on MRI abd my gynae has recommended laparoscopy and also hysteroscopy to remove fibroids (fibroids not caused by endo but a common co-occuring condition). While my gynae feels confident surgery would help with pain she doesn’t know if the womb surgery would help with severe heavy bleeding which is by far my worst symptom. Given this is the case, I’ve decided that if I do have surgery it will be a hysterectomy (removing womb only) as this is the only surgery guaranteed to stop the bleeding.
However, as a woman without children I’m not yet ready to do that, so I’ve declined surgery. I’m hoping not to have to have it and am learning to manage my symptoms through medication, lifestyle changes and sheer grit. Some people might disagree with this approach but for me it’s absolutely the right one right now. I lived with undiagnosed endo for 23 years, from the age of 13. I was only finally diagnosed with endo after long covid made my symptoms so bad that the drs could no long fob me off with “it’s just a period”. Because I have such a long experience living with endo and no medical help or medication, I had to learn how to self-manage and cope. Post-diagnosis I now have access to proper painkillers which makes a huge difference and I feel hopeful that given my previous experience, in time I can learn to live with and manage the worsened symptoms. Yes, there are compromises, but for me right now, they’re better than the prospect of surgery.
I currently take dienogest, tranexamic acid, ferrous fumarate (high dose) and prescription painkillers to manage things. Regular yoga practice also helps me. I’ve recently cut out all gluten too, though not sure if that’s helping so far! You could also look into various books around how diet can help endometriosis by reducing inflammation.
Hi Emily. I'm in the same boat as you. My recent MRI seems to show endometriosis. I haven't got my next appointment until October but I think my consultant will recommend surgery then since she already offered me a lap for diagnosis reasons in August but I turned it down then. I'm like you. I'm very wary of going through the surgery and either it not making a difference or it making things worse. I'm writing down tons of questions to ask my consultant about the surgery and what she thinks will happen if I turn it down.
I'm sorry I can't help you make a decision. But just so you know, you're not alone!
Thanks for sharing your experience and I’m sorry your also going though this. And wow it’s actually nuts how much in the same boat we are, I also was offered(/aggressively pushed) towards lap for diagnosis but turned it down and faught for an MRI first. Which I had back in June (the wait for results has been VERY long) had an appointment booked for 12th sep which they then cancelled and am now booked in for early October. Something iv been reading about which has been quite helpful is the different types of endo and the efficacy of surgery depending on the kind. This was a great and really informative article, just incase it’s of any interest to you-theguardian.com/australia-n...
It feels very telling that the doctors (at least so far in my experience) don’t tell you about any of this!
I hope it all goes well at your appointment in October, let me know how you get on 👍
Sorry to hear you've had such a long wait. It is strange how similar our experiences are! If you ever need to talk to anyone, please do reach out via PM!
Thanks for the article link – really interesting! I think I'm starting to understand that I should probably have at least one surgery to understand the extent of the endo I have, as well as to confirm what type, since the MRI shows evidence of deep endo. But after that, I doubt I'll want regular surgery due to it causing more scar tissue and potentially more pain etc.
Hope your appointment goes well once it comes around. Let me know how you get on too!x
I completely understand the dilemma and I suppose I am here myself also. I had surgery 4 years ago which reduced my symptoms for about 6 months and then they returned so when I was offered surgery again about a year ago I was more hesitant. I have also read a lot more now and am aware of how varied the evidence base is and like you say the potential for making things worse with scar tissue and or injury to organs having endo excised from them.
I have also experienced the NHS leaning towards the surgery, maybe because this is all they’ve got to offer but I also constantly hear things from them that contradict what the research says which concerns me. Have you considered getting a second opinion or even getting a specialist scan? Having a specialist ultrasound helped me to decide against surgery for now because it showed something completely different to my NHS scans, it showed no deep infiltrating endo when NHS MRI and ultrasound showed I had stuck ovaries etc. the guy literally showed me my ovaries bouncing around not stuck. The private consultant second opinion also helped, he was very level about surgery and said it’s not cure or treatment it’s about symptom management, it’s quality of life surgery, so if you’re symptoms are so bad it’s worth the risks then you take the risks and if they’re not you don’t.
The thing about whether it progresses is what worries me the most, there doesn’t seem to be a clear answer to that, it seems sometimes it gets worse, sometimes stays the same sometimes gets better. I’m just hoping if I work on other areas such as nutrition and relaxation it won’t progress. There’s quite a lot of writing about how this stuff can control the progression such as in the book ‘heal endo’.
Best of luck making your decision, sorry I’m not further along the line to tell you how it’s gone! Also interested in hearing from anyone else that has decided against it.
Thankyou SO much for sharing your experience, and I’m sorry that you’re also going through this. So much of these responses I am reading and sat here going , YES EXACTLY! 😂 it’s so validating to hear that other people are thinking the same things! That’s super interesting about the private ultrasound (was it an ultrasound or MRI?) If you don’t mind me asking was it very expensive? I had to fight tooth and nail to get an NHS mri. They wanted to do the lap straight away with no MRI, because and I quote ‘MRI’s are too expensive and don’t show anything’. Not the attitude you want to hear from your doctor, let alone that that’s literally not true that they don’t show anything (sigh). If you don’t mind me asking where are you based and how did you find/where was the specialist scan? I think this is something I might consider, depending on what happens at my next appointment. I basically want to know what sort of endo it is and exactly where it is as I think this will really help me make my decision. From the reading Iv done it sounds like if it’s deep infiltrating, sometimes it can get kind of enmeshed with nerves so cutting it away can do a lot of further damage to those nerves and make things worse, whereas if it’s more surface level (can’t remember exact term) it’s easier to remove and more likely to have the desired effects.
I’m also really interested in looking into some complimentary therapies and nutrition etc, so if there’s anything you have tried and recommend I’d love to hear 😊
Thanks again for your response, I honestly cant express how much everyone’s replies mean to me ❤️
I’m quite surprised how many people here have turned surgery down.
My case is absolutely different from others the choice was pretty much taken away but it took me so long to get anyone to listen the progression of the disease whilst fighting (8 years) was significant. So much so that pain/bleeding was daily. We couldn’t even try for children as my organs were eventually stuck together making intimacy impossible. So many are fighting for surgery, an NHS consultant would not suggest it if it they didn’t think it would be beneficial for you. I have also had fertility checks carried out during the excision op as we also do not have children yet, so you can make this work for you. (Tube dye test) The MRI can also only see so much, my attitude was at least once they’ve been in they’ll know more re, what impact my endo/Adeno will have on possibility of getting pregnant. I’m 33 so this was a huge concern for me.
If you aren’t going to agree to surgery my only suggestion would be at the very least try to treat hormonally (if you can), as without the risk of progression/worsening symptoms will be high. Which is counterproductive to achieving pregnancy.
thanks for sharing and I’m sorry your going through this. I’m 35 (nearly 36) and we would like to TTC imminently so hormonal treatment isn’t really an option. Intimacy is also an issue for us, it is VERY painful. Part of my resistance to the surgery is that it was very aggressively pushed on me by the doctor as a ‘first port of call’ so to speak, when I preferred a less invasive approach of MRI first. The doctors reasoning for going for lap first was that and I quote ‘MRIs are too expensive and they don’t show anything’. Which I just feel is not a helpful attitude to have when faced with a patient who is anxious about surgery. not to mention that saying that the mri never shows it is straight up incorrect. I am also aware they he is part of a surgical study and my impression is that he seems very eager to cut regardless of whether that is the best approach for the individual case infront of him. Part of my personal reasoning for being resistant to the surgery is that I have had another gynae related surgery in the past which has caused irreparable damage to my cervix, which they initially lied to me about. I also know someone in my area who had the endo surgery at this hospital (we only have one hospital in the county so no option to shop around so to speak) and they massively botched it leaving her in permanent excruciating pain because it was done by someone who was not a specialist and didn’t know what they were doing. There have also been things that I have brought up with the doctor from my own research (very basic things that everyone on here will know about) that he had no clue about. So all of that to say my trust in them is on the floor. So I’m not questioning/turning down the surgery lightly, I have very good reason to be hesitant about it. And it’s sad because I want/need to be able to trust them, and having to question everything and not having that trust makes this whole thing even more stressful and upsetting.
But I’m also with you on the thought process that once they’ve been in we’ll know where we’re at, and hopefully can make more informed decisions based on what they have found. I just wish there was a less invasive way to get that info 😵💫 That’s really interesting and good to know about the fertility check, I had no idea about that!
Thankyou so much for all the info I reeeally appreciate it and I hope the surgery has helped you and wish you the best of luck on your fertility journey ❤️
Well your hesitancy makes much more sense now. I’m so sorry to hear they have caused damage when previously providing treatment for you and lied to you about it, that’s absolutely shocking!
Do you know if you are at a recognised BSGE specialist centre?
I had a lot of problems with my local hospital gyne team and agreeing to surgery with them would have been honestly difficult so I can certainly understand your reasons for thinking of not going ahead. Thankfully my MRI showed endo which was too complex for them to operate on. It sounds like a specialist opinion is needed, I can’t fault the treatment of the BSGE centre I was referred to, I am mostly anxious anyway and was terribly so on the day, it felt like a panic attack was looming but they were so good with me, it’s all about finding the right people to get what you need. A lot of teams use the MRI to assess level of surgery needed so I’m surprised they have said it’s too expensive and don’t show anything, that’s not always the case.
I’m sorry honestly, it’s like finding a needle in a haystack - finding a consultant that is equipped and empathetic enough to listen/understand. My most recent was the fifth I’ve seen over the eight years. I’d definitely go elsewhere xxx
Hi EmilyIt's so hard isn't it we have to make that call. So I have endo of the bowel which stuck to my cologne and right overy I had laparoscopy last January where he found 2 endemtriomas which he drained apparently my tubes were fine didn't touch the bowel as didn't have bowel surgeon on stby and I was starting IVF straight after. fast forward this year new consultant I'm just recovering from 2nd surgery my tubes were now blocked endemtriomas back so my consultant thoughts were as my symptoms are very minimal that a bowel resection would be risky possible stoma bag and actually it will grow back as it's progressive seen as fertility is key we took away my tubes and drained endemtriomas I'm currently on zoladex to slow things down and keep period at bay whist I wait didn't really touch the endo I guess everyone's different but yea my consultant actually agreed with me obvs gave me all my options first and benefits to each scenario could be possibility to seek fertility advice freeze your eggs if possible. Wish I had that option but here we are good luck
You truly are the only one who can make that call , but you need to based on as much information as you can.
You don’t say how advanced the Endo is or the challenges you face but there are few guarantees with Endo or modelling your plan based on others experience. The reason being even the poor levels of research indicate there are variations of Endo and speed / extent of progression. Your story is yours … so you need to work that into the equation.
Good information like good treatment is your key. Try Heal Endo by Katie Edmond’s who advocates for a multi pronged approach as a start and look at the Edinburgh Uni studies for other therapeutic approaches to Endo for a kick off. Any surgery ensure your surgeon knows their shit before they come anywhere near you. Good surgery is also a blessing.
10000% to all of this, such great advice thankyou ❤️ and thanks for the book rec!
So far I don’t know how advanced, I had an mri back in June and it has taken constant chasing from me to get them to send me my results in a letter (I have only just received this 3 months later, when I was meant to have them in 2-3weeks) and it just says endo on/in the area of my uterus. I was due to have an appointment this week but they cancelled it so now won’t be seen till October. Which is when I will be asking all the questions re how advanced what type of endo etc.
Re the challenges, the pain (at least extreme pain) is mostly isolated to my period other than mild pain here and there outside of period. Very bad pain during sex (to the point that this is an extremely rare ocurance and often impossible) some bowel issues, that include bleeding (though gp has also said I have hemmroids) and recently wetting myself a little bit. I also have some ongoing heart issues, which they haven’t been able to get to the bottom of and which I sometimes wonder could mean that the endo is in my diaphragm. None of this is great, but in some ways I feel lucky in that the worst of the pain is mostly isolated to my period, I work from home and in some ways I feel it’s manageable (though ask me that when I’m in the thick of it and I might say something different 😂) so part of the toss up is, is it worth it? Are things so bad I’d risk things maybe getting worse or the risk to fertility that surgery could cause? The answer is currently no, not with the limited info I currently have. But that may change depending on what they say at my ap in October or if we start TTC soon and have trouble getting pregnant. I sort of feel like at the moment I’m tieing myself in knots and could honestly persuade myself either way (for or against surgery) because for every argument for it there’s an argument against and visa versa 😵💫
You might want to look at Endo News website. It’s a research papers site and gives all manner of insight into information around Endo. They do a lay summary version with each paper. There is a recent study demonstrating a high co morbidity between Endo and heart conditions. Given the link between certain genes with both Endo and heart issues that also are linked with a higher requirement for Omega 3 (NSPR???) ( can’t remember the number offhand ) am not surprised. I also have heart condition too so you have my sympathy.
You will likely find a lot of understanding between breathing issues and pelvic floor issues associated with Endo with listening to the talk between Leah Brueg and Dr Angie Muller. @leah.brueg hyperlink to her podcasts I think it’s number 52. You may have diaphragmatic Endo but there are other reasons why Endo affects the mechanics of breathing.
I just want to put out a general reply to everyone responding to this post to say Thankyou so so much (I hope you can all see it). I’m actually a little tearful writing this, your support, compassion, all the insights, information and POV your are sharing are so incredibly helpful I actually don’t think I can eloquently express how much your replies mean to me. What an amazing bunch you all are! ❤️❤️❤️ thankyou, thankyou! And keep em coming 😜
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