Has anyone just had ONE surgery to excise endometriosis and it has never caused them issues again? From what I have read, people seem to have multiple surgeries through their lives and the endo gets progressively worse over time. I know the length of time seems to differ for each person, as does the seriousness of the endo. But I haven’t heard anyone say that they had one surgery and they have felt better ever since and that the endometriosis has never returned. It just seems to be a way of managing it. My family seem to think that, since I had my first laparoscopy 2 months ago, everything will ok ok now and there is no need to be concerned. X
Only ONE surgery?: Has anyone just had ONE... - Endometriosis UK
People have several mainly I presume because they don’t get it right the first time if endo is minimal and with proper excision and management it shouldn’t come back I would guess but can’t be sure if it becomes severe you may need several surgeries to keep it at bay but it can grow back if it’s not excised must be excised and silly operations just for a diagnosis are just stupid girls are thinking they are crazy and asking for diagnostic laps when they no deep down they have it so they may have one diagnosis and one to remove endo and if they have bowl issues another one for bowl
I understand that but if worst comes to worst I know I’d pay monthly like you said their is more options now I’m sorry you didn’t get answers for so long it must have took you to great despair if I think of what is missed out on life for it not being treated the cost is worth it not to wait for me I have already missed 2 months of work because of this disease and I’ve had it almost a year now also my life is affected as in I can’t do anything social etc I used to be a bubbly person into professional dance and it affects me so much there’s lots I can’t do with kids or housework I have to force myself a lot to do things but I’m going to get help if my general gynaecologist Dosent listen I won’t wait I’ve been here before with the nhs had to go private then cause I wasn’t listened to
Hi I was diagnoses within 3 days of being admitted for pelvis pain in sep 2018, I had my first lap in aug 2019. Since then I have had my follow up and given the all clear. I have not had any endo pain since. But I am now experiencing lower back pain,left thigh pain. I have been referred for MRI. But I have not had any endo pain.
I had a 3 days of horrendous pelvis pain, I went to my gp and she said she will refer me for a ultra scan but if the pain comes back before the appointment then to go a&e. The next day the pain came back again, my temp went up to 39° and my brother called an ambulance. I then waited 6hours to finally give bloods and urine and then later be admitted to a bed in the gynae ward. Because it was a Saturday they could not do any emergency scans and I had to wait till monday. On monday they took me down for a transvaginal scan and there I was told I had a endometriosis cyst stuck behind my uterus hence why I was getting agonising pain. I didnt want to have any surgery because I I myself didn't know what endometriosis was, the gynae doctors told me there are risks in doing surgery. I was overwhelmed with it all, I had asked them questions but couldnt get any answers, they kept saying we still investigating how woman get endo and there is no cure to it. So they put me on emergency scans every 2 months. By the 2nd month I had two 41mm endo cyst in my left ovary too. Every 2months i was getting flare up pains which consist of me having 9 hospital admissions to put me on morphine to calm the pelvis pain. I then did some research and found out I can refer myself to a bsge centre a actual endo centre within nhs of course. I then discharged myself from gynae specialist as they kept me waiting more than 6months on surgery list, I got into a endo centre and had my surgery within 3months. I am now endo free and no more flare up.
Go on the bsge website and pop your post code in to find the nearest hospital near you. ideally look to see they have a fertility treatment centre, pain clinic too as this will support you if you had any complications later in life if your trying to conceive etc. I am only 31 and was diagnosed when I was 29 just before my 30th. I have no children yet not married but would like kids one day. Good luck any questions please feel free to ask. I am currently on no medication just taking evening primrose capsules and vitamins to keep me going. x
Wow I’ve been to a and e and they couldn’t scan me last month I went but they told me to go to the gp I also went at other times and was sent home with pain killers and told I must be pregnant despite negative test they did and I’d just had a period and even mentioned endo they still did nothing I waited hours in a and e in pain decided not to keep me in and said it must be pid I know it’s not this as I’m in pain all month and more on my period how did you self refer I’ve seen an endo specialist online on nhs but I was thinking to ask for the referral at my gynaecologist appointment as didn’t know how to self refer
Also I had a trans vaginal told I had cyst but not the type they referred me for more ultrasound and still I have cysts they only told me about one but I found out later I had two and follow up scans they won’t do an internal despite asking and it’s really frustrating been waiting 8 month for answers I know people have waited longer but I can’t put myself through that I’ve tried my best to get answers i think I will need an operation because I just had a misscarrige at 13 week nearly
Awww I'm sorry to hear about the miscarriage. I went to my gp after I had my last flare up in March got discharged from hospital and saw a female gp she was trying to put me off in referral, I was under a gynae specialist but felt like they kept giving me transvaginal scans and not pushing the surgery quicker. I was stage 3 under gynae within 3months it got to stage 4. I wasn't happy that the female go was trying to put me off then she said I can give you a private referral but I said no to that because with private you dont really get the after care, followup etc your just going in for the consultation and then surgery and that's all. The next day I booked another gp with a male doctor he was more understanding I told him I cant live life like this been in constant pain, feeling like my whole reproductive system feels like is going to gush out, I hate the feeling, I can't live life going in and out of hospital for pain relief and staying there for 2 weeks straight. I then told him can he refer me to bsge centre I have three hospital in mind, he then looked online and checked to see which had a earlier app and that's when he booked me in with them. On my first consultation the surgeon already added me on the waiting list for surgery to save time, then sent me for a mri he said the gynae should have sent me for mri not keep doing a transvaginal scan as that does not detect endo in the bowel. The next month I had mri and it appeared I had endo spread in my bowel too. The following month I had my surgery. I recovered within a week and half and went back to work. Since then had no flare up and been told I am endo free. Please try and see a male gp or a different gp and Express to them you would like a referral to one of the chosen bsge centre. I know from reading post in here that some ladies have suffered since the age 14 I can not imagine the pain they have gone through. For me the last 11months really hit me emotionally, physically and mentally to understand all this endo pain and the changes it has done to me on a day to day basis. I had some telephone counselling to help me and that really helped a lot and I was no longer getting emotional about the pain j was going through.
Please try again and see a gp and ask them you want to be referred to a bsge centre. They also support with fertility treatment. My gynae tried to put me off from discharging myself as they wanted me to let them do my surgery but I am glad I didnt with the endo specialist he really taught me a lot. He said gynae specialist are not trained enough to notice what endo looks like, they can say if it's a cyst but not know exactly, especially during surgery. If a endo specialist is carrying out the excision surgery they can automatically cut away even superficial endo whilst doing laparoscopy. I remember when I was put on the pill and my womb lining discharged out of my body, it's called a decidual cast which looks really scary as it's a pink sack that gushes out of the vagina when I took it to my gynae she said she doesn't know what that is but they will try and send it to the lab,which they got back to me as saying they do not know. I had to do my own research and found out it was a decidual cast which sometimes sheds out of the body if you have endo. it only happened once Thank God.
That’s scary I’m on the pill now and keep having clots I have my first gynaecologist appointment on Monday my plan was to ask them for a referral to the person I found on nhs and take the endometriosis consultant plan online with me if it doesn’t work I will ask my gp for the referral to him and see what she says I don’t want no more scans they keep doing that to me I’m getting no where I know I’ve got cysts they won’t tell me what type I know I’m near stage 4 now cause I bleed out my bowl it’s getting worse and time keeps ticking that’s really frustrating how long did you have to wait for them to refer you to a specialist I will try and be firm on Monday although it will be hard I’m taking my mum so hopefully some support will help
I went to my gp and he found the next referral appointment for 4 weeks time, so I took it as I was in desperate need of going to someone who could support me quick before more damage was getting done. Gynae wont refer you coz they will want you to stay under their care. So gp willbe best and yes dfoz take someone for support. I didnt take anyone but luckily my male gp understood and be quickly found a referral appointment for me.
Yes you may experience pain and the body has just gone through surgery so you will experience new and some old pains. But hopefully that should stop after 6 to 9months as they say.I had mine done in Aug and had pain until oct. Now pain free. But it would be good to check with your endo surgeon for a MRI scan just to see your endo has not grown back. Excision does cut out the endo. But that dont mean to say more can not grow else where. If you changed your diet that should slow down the process of reoccurring endo growth. Such as gluten free and cutting away dairy product.
Yes I had that I had symptoms but no bleeding. Until I was on my pill free week and started my period it was horrendous never felt such pain in my life for period. After that I hadn't have pain. But will see how my next period will be. They said your first period after surgery can be very painful. x
Sorry to say 6 surgeries for me over a 27 year period with the last one being a total hysterectomy at 48 with bowel complications at hysterectomy and potential nerve damage. During the years danazol, pan relief and the progesterone only pill which seemed to be the best option for me but in the background it had carried on growing hence the repeat surgeries. Sorry not more positive news xx
Well, NO I Has never heard of anyone who just had ONE surgery to excise endometriosis and it has never caused them issues again! That would be brilliant ! If there is someone she is certainly a minority. What I have heard A LOT is that you can maximise the time between operations if you have a proper vegan /endo diet.
But I think you are right , people seem to have multiple surgeries through their lives and the endo gets progressively worse over time. I suppose its because as long as you are in a reproductive age your body keeps producing high levels of hormones particularly estrogen. Apparently Endometriosis its primary caused by a hormonal imbalance. Its a cronic desease so it seems that once you get it, the best that can happen to you is that you become asymptomatic (don't have any/many symptoms). Pelvic Pain , leg, back, constipation fatigue, etc etc. Which I have never heard. Apparently there are at least 2 types of women with endometriosis, the ones who experience pelvic pain (and a range of different symptoms) and the ones who learn that have endometriosis because they can't get pregnant, but they never have had pain or other symptoms.
However, I have my one and only diagnostic endo operation in 2016, I am not planning to get any other never ever again. Back in 2016, they said they eliminated the endometriosis "they found in the pouch of douglas . They also removed small polyps but they didnt /couldn't get rid off of small fibroids. I was in horrendous amount of pain after that operation for at least 3 or 4 months particularly 10 days before my periods. A excruciating stabbing pain that I didnt have before the operation (in that intensity), in fact, my 10 days before periods were worse than my actual periods in terms of pain. I kept asking doctors why, no one knew, no one seems to care. First, I assumed everything was raw and healing inside but as months progressed i just thought they did a rubbish job or the fibroids were causing me the pain. I asked around to fellow endo girls, if after the operation they were pain free or better . The majority I asked said the pain always comes back. I felt defeated and wishing to die.
After 6 months I felt that the pain was slightly better. Then, I had very good periods ( no that painful) and very bad ones. In 2018 I started to have more bad cycles/period and less good ones. My quality of life got worse. I neglected my diet and started eating more junk as I was so tired and ill to cook for myself. The Doctor saw me and put me on a list for another operation. I waited 9 months before they called me to do the pre assesment for the iperation. I was anemic as I had no energy to cook nurturing meals that compensate for my excecive bleeding. So they couldn't operate me straight away. I was put on iron for 2 weeks , while I was waiting to get better I asked if they could guarantee me I was going to be pain free after a 2nd operation ,- I am still grateful the specialist gave me a straight honest answer-: "No I can't guarantee that." So I went off am did intensive personal research. I found LDN (low doses of Naltrexone) and Endovan. (Not available in UK)
I am on them since August 2019. In these few months the difference is MASSIVE, I left the option of a 2nd endo-operation open just in case my experiment with endo and LDN didn't work., but so far SOO DAMN good! I am dismissing myself from the clinic I am telling the doctor I am not having that 2nd operation. I am still in some discomfort but my days of excruciating pain are gone! Of course, I am following a strict endo diet the same one that kept me away from a 2nd operation for 2 years) I feel as I am progressively better I have a feeling this is it for me. NO MORE PAIN . I am not sure whether this treatment cure endometriosis maybe not, but I am sure that I am becoming asymptomatic which Is a PLUS PLUS for me.
If you want more info about my treatment please let me know.
Naltrexone hydrochloride is a competitive opioid antagonist, traditionally used in the treatment of opioid addiction. More recently naltrexone has been evaluated as a novel treatment of chronic pain. For the indication of pain, significantly lower doses are used (~1/10) than in the treatment of addiction--this is often referred to as low dose naltrexone (LDN) treatment.5,6 LDN has demonstrated anti-inflammatory benefits in the central nervous system by acting directly on microglia cells and has also demonstrated a paradoxical effect on the opioid receptor.5,6 Prior studies suggest that LDN improves symptoms in other chronic inflammatory disorders.
I copied and pasted this from this page. If you type in google and in you tube you will find even more info. I have a video that is particularly helpful . I ll try to send you a link soon. For now please pinch this link:
Also please have a look at this video of Endovan if you haven't . I thought it was fake advertising at first but is not . It has helped me a lot
I have mine 3 years 3 months ago and have felt good (especially with no more monthly-thing) since except for the patience needed during early recovery stage. Out of the blue, I feel pain pelvic pain - tried changed bed and have continued with light exercise - walking, slow swimming and 9-holes golf since GP says I can if the pain is not unbearable. The pain is usually worse immediate in the morning, getting off bed and after simple stretches (which I have done for 40 years), normal activities are possible, just the pointing pain that strikes at certain angle or movement. Frustrating.
Will be going to see my gynae next Monday, 9th, as she has been telling me to do so should I have issue again. Scary and hope it won't be something serious. Cheer up, yours might be good thereafter. Though, do make sure that you need an operation to regain a humane lifestyle. There are potential risks that come with every operation.
I’ve had two surgeries for endo so far. I was diagnosed over 11 years ago. I have had lots of other treatment though including medical menopause.
I’ve spoken to lots of people with endo and it seems very rare that someone would only require one surgery over their lifetime, after all you have periods for many years.
Once your endo has been excised your gynae will need to find ways to help you manage hormones etc which can cause more endo. It’s also very difficult for surgeons to get every last little bit of endo, particularly if it is widespread.
My advice would be to speak to your gynae after your surgery to make sure they give you a good ongoing management plan. The more surgeries people have the more this can cause complications such as adhesions.
I would say it is incredibly rare indeed to only need the one. I do know someone that has though. My mum has endometriosis, and was getting pretty severe symptoms. She couldn’t work because of the pain and even needed blood transfusions from how much she lost each month. She had a laparoscopy to find out what was going on about 19 years ago, they found endo and excised it. She’s not had any of the symptoms she’s been having since. She also has PCOS so has had to have laps for that since and they of course have a check for endo since she did have it but never found any more. The only symptoms she gets now are related to her PCOS not endo. She knows she’s incredibly lucky.
On the other hand I got diagnosed almost 2 years ago now and had excision surgery, and although my pain has reduced due to a combination of medications and hormones my pain hasn’t gone away. Doctors are managing things as best as they can, but I think it’s likely I will have to have another surgery either due to my surgeons missing some endo or it growing back already.
So it is possible to only need the one but it’s definitely not the norm at all.
If you get full excision with a highly skilled and experienced endometriosis excision surgeon as your first surgery, you have only around 10% chance of having to undergo another surgery again in your lifetime (that's the average recurrence rate offered by the best, most skilled and experienced endometriosis EXCISION surgeons, which are not many, probably less than 100 worldwide)
This is what I have read via research. Anyone needing more than one operation has likely not had a complete excision.
Some of the experiences I have read on here are horrifying but arming yourself with the right information can help so much.
Being fobbed of by surgeons who do not have the skills to excise it correctly, who blame reoccurring pain on the endo growing back when it probably hasn't all been removed in the first place.
Unfortunately the aetiology and pathenogenesis of endo is not known and many women will have recurrence of endo (including de novo endo) develop after the most thorough excision by the most skilled of surgeons. Unfortunately there is no 'cure' for endo, including excision, and the best we have currently is surgical management until a cause if found to address treatment at root before the disease develops in the first place.
I'm not sure what evidence you are referring to in saying 'most women who undergo laparoscopic surgery in the UK end up needing a second one, third one and so on' which is a very sweeping statement to make and an unsubstantiated reflection on the many excellent advanced surgeons we have in the UK? Women on this forum are here to ask for support and help and such a statement is totally unjustified and unhelpful.
We are aware of many women having repeated surgeries in the UK for recurrence of endo/incomplete original excision by surgeons on the list you recommend on another group, but this is no more and no less a reflection on their skill as it is on the skill of any excision surgeon in the world, including the other highly renowned UK surgeons. There are just too many variables to consider, but most importantly that we don't know how endo develops in the first place and every woman's endo is different with some not aggressive (and so might respond well to excision) and some highly aggressive with high levels of aromatase expression that will resist all treatments, however skilled the surgeon. One highly renowned surgeon can operate on any given number of women with the 'same' presentation of severe endo; some will be pain free after and some will not. Some will have endo recur, some will not. This they will admit to.
It really is not helpful for you to be indicating to UK women that they will not get adequate care here when our advanced surgeons have in many cases dedicated their lives to treating severe endo with a passion and have attained the highest of skills and experience over decades. I have said before that I don't know who you are, but for an Italian to be on here saying these things is outrageous in my opinion.
I had severe endometriosis and suffered terribly every month with heavy periods and agonising pain, it was unbearable. In January i had my ovaries removed and some of the endometriosis removed. The bit that was left has since died off because there are no hormones feeding it and i have not had one instance of pain whatsoever since the operation, it's been amazing. So please don't worry too much, try and keep positive and i hope that your surgeon is as experienced and as thorough as mine was. Good luck x
When I had my surgery last year to treat endometriosis I was told I’ll be back to needing surgery again after about 2 years. Might be earlier, might need it later. I have had a lot of relief since, but my symptoms are coming back. Surgery isn’t a cure, it helps manage the condition and ease symptoms.
I think everyone is different, and some people go pain free and symptom free for years and years, whereas others don’t. I have since started the depo injection which has definitely helped and reduced the size of the endometriomas I have inside my ovaries
Unfortunately there is no such thing as 'perfectly performed excision'. It would be wonderful if there was as it would then be a cure, but we know it's not. The cause of endo in its (as yet) identified forms is not known and even after the most thorough excision by who is considered the most highly skilled surgeon endo can recur. This many be from microscopic endo not apparent at the time, incomplete excision or de novo endo.
Clearly the skill of the surgeon is paramount and the best surgery is likely to be linked with a longer pain free period after (and maybe forever in some cases). But surgeons are realistic and to say that repeat surgeries may be required is simply telling the truth as to what is realistic, especially if severe disease is involved. A surgeon who suggests you might need another surgery in a few years is not necessarily a reflection of surgical skill and I would hope that the most skilled of surgeons would tell women this.
Quote from an article about this by Dr Camran Nezhat, the founder of video laparoscopy for endo treatment:
'The myth that excision surgery by an excision expert can cure endometriosis has persisted because some women do indeed experience a remission of symptoms after one particular surgery, or after a few surgeries that didn’t appear to help, followed by one last surgery, which did. At first glance, this would make it seem as if endometriosis is curable if only one could just get the right surgery. However, there are other women who have a more recalcitrant form of endometriosis, as well as other factors, who, despite having the exact same surgery by the exact same surgeon still experience recurrent endometriosis.'
Since there is no certainty as to why women develop endometriosis (although many theories) I don't think that there can be certainty over surgical outcomes. Until more research is done and the process behind the disease is fully understand it's to some degree a lottery, especially as it's fed by hormones which we produce and can damage organs and nerves which create there own issues. It's accepted that excision has a better longer term outcome over ablation and than diet and lifestyle changes can help manage symptoms (I don't believe there is proof they actually prevent it growing just it's easier to live with). It's a disease of uncertainty and that's hard to explain to people. I sympathize with explaining to your family. When I'm having a bad day it's frustrating to have the comment 'but you had surgery' from friends. I tell them my surgeon did not promise a cure, he aimed to reduce symptoms by up to 80%, it's a chronic illness so we still have to deal with some symptoms even after excision surgery.
It really depends how severe Endo is and how long had been there without treatment, in my case and many others have had more than once op. Endo comes back, the first time after 8 months and have had 5 ops already, and now the symptoms are coming back this has been the longest though 18 months without pain ... unfortunately the flare ups and burning stabbing sensation in my pelvis and my back have returned, as far as I know and what the doctors have told me there is no cure for endo 🥺 and if it isn’t treated on the spot it will grow back and in some cases like mine more severe. I think under the NHS it’s very hard to get a treatment straight away it shouldn’t be like this I think Endo should be treated as a matter of urgency it affects women on daily basis. I was left without treatment for two years until the endo specialist saw me... TWO YEARS!!! In that time endo affected other organs I have the worst case of Endo and now the chances or me conceiving are minimal. I am in Germany at the moment getting treated all in a matter of two weeks! already seeing the fertilisation clinic as I am not getting pregnant normally, this shouldn’t have happened if I was told straight away that endo could come back and affects fertility they never discussed the options or the consequences of endometriosis, I had to find out all by myself and it was too late... so yeah it is very likely that endo returns (most cases) and as I have read for other women hasn’t, so happy for them 💓
All the best to everyone
I had a laparoscopy in 1994 & diathermy to remove the endometriosis they found. Straight after, I was put on strong Hormones Danazol & then Progesterone with aim of slowing down the regrowth & depositing of more endometrium outside the Womb.
U r quite right. A Specialist told me a few yrs ago that he wouldn't do another laparoscopy on me because as soon as they do anything, it just grows back. At age of 32yrs, same guy told me to get pregnant, as it may help Or to have a Hysterectomy!!
I was put on a combined contraceptive pill, with no 7 day breaks for years, which did help. And I had some success with the Zoladex implant, which puts you in a 'Chemical Menopause'. The idea is "shutting off" all ur hormones stops the depositing of endometrium etc
I had a hysterectomy when I was 28 years old, I am now 64. I had never heard of Endometriosis, unlike now it is on the news most days. I did not have my ovaries removed due to my young age. I do believe a total hysterectomy is a better option. I also had rectal bleeding which I have had for 40 years. Hence, it did stop me having periods, as it was too painful for me when having a period, I had heavy bleeding and large clots. So every case is individual. A hysterectomy will help, even if it not totally.
Yes and no, in the sense the endometriotic lesions produce their own estrogen and are sometimes progesterone-resistant.
I do agree that a hysteroannessiectomy (removal of uterus, ovaries and tubes) can be a good choice if one suffers from adenomyosis, is close to menopause, wants to and also gets COMPLETE excision during the same surgery, because in that case all lesions are removed and it's therefore much more complicated for endo to reappear. Endo tends to grow further if some is left in the body, but I do agree that if there are no ovaries and all lesions are excised, it's very very difficult for endo to regrow back.