I had a laparoscopy (excision surgery) 9 months ago and they found stage 4 endo and adenomyosis. My question is, how common is it to be in more pain after the operation than before?
I had the lap as we’d been trying to conceive for a while with no success. I didn’t think they’d find anything - apart from heavy periods I thought pain was normal and to be honest I only had pain around the time of period.
Fast forward 9 months later, I’ve had multiple rounds of unsuccessful IVF and I’m in daily pain with bloating and inflamed painful feeling. I used to exercise a lot before but I haven’t been able to because every time I try to run, do squats or even just long walks it flares up even worse.
Has anyone else had a lap and actually made things worse? Is this normal and me just taking time to heal?
Thanks 🙏
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Mintypop
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Hi Mintypop. Sorry you are going through this, I know how disheartening it can be to go through surgery and recovery and things not be resolved. I am almost a year post excision surgery and like you I still have pain, bloating/swelling and find it nearly impossible to exercise and as you say even just going for a long walk, which I used to love, can cause pain. Stage 4 is quite extensive so I imagine they had to do a lot during your surgery?
My consultant did tell me that it could be up to 8 months to see real improvements but that there was no way of knowing how much of my symptoms were endo and what were adeno (my adenomyosis was seen on mri before surgery). I would say I have had some definite improvements in some ways that I can now identify as endo (for me random stabbing pains across abdomen, flu like symptoms around period etc) but it has now become clear what I thought was all endo pain was adenomyosis.
Centralised uterine pain, heavy bowling ball feeling in pelvis, extreme bloating/swelling, bowel issues, cramping throughout the month, pelvic floor pain when walking etc. Heavy periods. Some things that help me personally: mefanamic acid before and during period to reduce pain and bleeding, trying to eat a lot of anti-inflammatory foods and supplements with omega 3, vitamin d etc. And the biggest help is pelvic physio with a specialist to help with the all the muscle tightness and spasms adeno can cause. GP prescribed muscle relaxant which also helps a lot. Physio also helps me with massages to help with rigid scar tissue from my surgery. Ultimately I know I will need a hysterectomy which is brutal to deal with ( I am single and no kids). I know that it can be a lonely place and after surgery everyone just wants/expects you to be fine so if you ever want to talk know you are not alone. Perhaps ivf treatment has flared things up too with hormones etc?
But don’t give up hope, plenty of women with adenomyosis have children. I hope this might be helpful. Rest and go easy on yourself xx
Thank you Arty for taking the time to reply, really appreciate it. The bowling ball feeling (exactly how I feel!), bloating and bowel issues you mention, is this what is actually caused by the adenomyosis rather than endo? Mine is terrible by the evening and really painful lying down trying to sleep.
They found endo everywhere apparently (which I still can’t believe) including bowel and ureters and ligaments near ovary. Endo hadn’t even crossed my mind until experiencing infertility as I actually didn’t experience pain apart from “regular” period pains. I feel like I’m now worse off, as if the surgery has some how awakened the endo. I really do feel like it’s made something that wasn’t an issue for me into something awful. My body doesn’t feel like my own, constantly look like I’m smuggling a bowling ball and pain.
Agree ivf hormones (3 x egg collections in just a few months) have perhaps been too much. It’s so hard as really unavoidable if I want to try and get pregnant as I am 35 with low egg reserve.
With the anti inflammatory diet, is there anything specific you are following? There is so much conflicting information I just eat normally at the moment but at this point willing to try anything!
I am so sorry you are going through the same thing. This really does suck massively! Xx
Hi mintypop…oh I am sorry it is absolutely horrible isn’t it. Especially when you say you weren’t suffering that much before and now feel worse! I think I would also be reluctant for another surgery (apart from hysterectomy) as in some ways I feel I am worse off. But at the same time I went for 20 odd years undiagnosed and had a lot of scar tissue and inflammation when they did the lap (though my endo was not nearly as extensive as yours). So I hope maybe it’s just that my body is taking a long time to recover, thinking about irritated nerves etc.
You must have had a really intense surgery and maybe still healing. For me endo excision has just highlighted what symptoms were caused by adenomyosis (like the ones I mentioned and also forgot to say deep lower back pain) it’s very debilitating not being able to go for walks etc. And there’s not much help for it. Definitely try find a pelvic physio, mine also does acupuncture which helps a lot and I hear people try this for infertility as well. Sounds like you’ve been through so much but hang on in there and I really hope it works out for you with the baby. I am holding out for this but now 39 and single so starting to think my life is taking a different route than I’d hoped. Diet wise yes basically add in lots of good stuff and omega 3 which is anti-inflammatory. I try to limit dairy and gluten. But you know we have to live as well! There’s lots of good books out there on endo. One called ‘Beating Endo’ is quite good and it does into adeno as well. I wonder if your consultant will be willing to offer any advice? I feel after surgery we just get left to get on with it! Xx
Hi, yes completely understand how you are feeling. I've had two ops, including a hysterectomy, unfortunately no colorectal surgeon when there should have been, so waiting a third.I hope you do get some answers soon and your GP or consultant are helping with pain relief and referral to the pain clinic. Did they take out all the Endo they saw at the time?
Thank you. sorry to hear you’ve had a hard time. Yes apparently they exicised it all. I had no pain before (just infertility) and now it’s pain every day. Makes me wonder if they’ve done more damage then good. I’m going to book a follow up with the endo surgeon to see what it might be, I do wonder if they’d suggest another surgery but it has only been 9montjs since the first
There was an article about Endo and operating a few months ago that suggested there might be too many. I think it was the guardian. Trouble is they really don’t know. The team that were part of the article are going by scans, I got refused because they couldn’t see active Endo on the MRI. Well worth talking to Gynae see what they say. Another gynae told me if after a year there is still pain go back. I gave it around 2-3 months after finding there was no colorectal surgeon.
I feel exactly the same. My operation was 10 months ago now and beforehand I had period pain and slight pelvic pain but mainly infertility. The operation showed I had stage 4, literally everywhere, and adhesions which fused my bowel, uterus and vagina together. They removed it all and ever since the pain has been worse and completely different. It's a mixture between dull pelvic ache, searing pain and then congestion, like for example when I'm ovulating it feels like there just isn't enough space in my pelvic area for what's happening. I have mild adenomyosis but I didn't feel those things before so I'm pretty sure it's not that.I'm going to see another surgeon in a few weeks for a second opinion. I've been reading a lot about further adhesions and nerve damage after the operation. I'm wondering if it's a combination of both those. It's definitely frustrating and hard to make a baby when it's so so so uncomfortable.
That’s awful so sorry to hear. I hope you get some answers from the second opinion. I’ve decided to have a check in with the surgeon as I actually haven’t had one since surgery apart from a few days after. I worry the only way to fix it would be to have another surgery. Are you also doing IVF/ fertility treatments? It’s hard to know what is the drugs and what is flare ups from endo. I feel like the drugs have added fuel to the fire!
I was so eager to sort it out I went to a endometriosis specialist and he was just like, "I've taken it all out so you'll be fine" and sent me on my way. The new surgeon we're going to is an endo & infertility specialist so am hoping to have a more wholistic approach. So no IVF yet! I've heard it's really hard work so I want to try everything else possible first. Did you try other things before IVF?
I worry about the surgeries too. I've read about women that are on their 10th or more surgeries forever correcting the previous one and I really don't want that to be me!
I’m so sorry to hear this! It’s so, so frustrating. I had a lap last year and was told all was “normal.” However, a new specialist has gone over my op reports and thinks it’s still endo, and we noticed pathology results showed congestion in several areas of my pelvis. We have talked about going BACK into surgery, but I’ve also consulted a vascular specialist before we do. Have you thought about looking into a vascular specialist for pelvic congestion? Asking because I have many of the same symptoms post-op you’ve stated above and my test results from the vascular specialist just came back as having quite a few things going on that could be causing my pain. Even worse, Endo usually goes hand in hand with this condition (or so I’ve been told 🙄). I would definitely suggest looking for a vascular specialist to maybe test a few things, rather than just a ob/gyn since they’ve found things on ultrasound previous doctors weren’t able to.
Thank you for your reply Becca, I hope you get some answers soon. So sorry, could you explain what you mean by congestion? And how the vascular specialist works,/ how do they fix it, did your obgyn recommend it? So many complications with this horrible condition!
Hi there, sorry it took so long for me to reply! As far as my ob/gyn is concerned, we’ve discussed moving forward with another lap by end of this year/beginning of next. However, the decision to see a vascular specialist was based off of several other symptoms (migraines that don’t respond to treatment, veins that are blue & bulging, new spider and varicose veins, heaviness and pain in pelvis, and even off and on swelling in my ankles). I’ve had several cyst rupture before and after my lap procedure last year. Basically, because they specialize in looking for things that might be wrong with the veins and arteries in your pelvis/abdomen, they were able to see things on ultrasound that aren’t normally looked for and things that were missed on my last abd/pelvic CT. They recently found dilated veins in my pelvis as well as possible compression on my iliac vein. Not saying that this is definitely what you have as I’m not a doctor, but this year I’ve been forced to trust my gut when it says something more is going on and search for answers outside the normal ob/gyn speciality. And I know a lot of women on here are forced to do so as well. I basically have just been tracking my symptoms (especially documenting changes with pictures, I know that sounds weird) and I told my ob/gyn what I’m doing and who I’m seeing and she said to keep her updated. A lot of endo specialists actually treat pelvic congestion and vein issues that could be causing pain, so it might definitely be worth looking into! I’m not sure how they treat it, as my doc and I are still running tests, but I found my doc by doing a google search for “pelvic congestion docs near me” and narrowed it down based on others’ reviews and how much experience the doc seemed to have.
I hope this helps and I truly hope you find answers soon! Ask me any other questions if you would like feel better soon!
With stage 4 endo you need to be at an endo centre. Called bsge centres as you need a multi disciplinary approach. I had much worse pain after surgery as endo had not be removed properly and got sewn into structures. I probably had deep infiltrating endo too but that wasn’t diagnosed until after my hysterectomy. But worse pain 9 months after surgery needs looking at and it must be at a bsge centre with endo specialists. Your gp or gynae can refer you on.
Thank you Marcia, that sounds terrifying. When you say multi disciplinary approach what other doctors do they have? I went to an excision specialist in endo. Thank you!
They have access to colorectal surgeons in case bowel involved or even just stuck with endo and urogynaes who deal with bladder endo. And most important thing is they always have two endo gynaes operating to be sure they don’t miss any endo.
I’m so sorry that you are in such pain all while going through IVF. Before I had excision surgery, I did IVF and noticed that my endometriosis was worse and I had many more fibroids after I had my baby. I was told it could be because of all of the hormones that were used during IVF.
Are you thinking about doing another laparoscope? Is your doctor very experienced?
I have had two laparoscopies and one was only 18 months ago but I am now in just as much pain as I was before. My consultat gave me the same guff about needing to wait 8 months to see if the pain would reduce but it hasn't.
I have tried expalining to him that the pain is back but he just laughs and says it can't possibly be the endo. Another girl had her lap the same time as me and is no in lots of pain again. She had a further scan and they said she was still full of endo, the endo had not been removed properly and she is arranging another operation.
I paid 8000 pounds for this surgery privately and about 2000 more for the consultations /scan /follow up. This surgeon is supposedly very highly rated but I have chaecke dand no stats at all are kept for endo surgeons success rates. So all you can really tell as a patient is how much they talk themsleves up on their websites.
I am deeply unimpressed he told me that my pain would definitely go away after this operation and I really believed him. There were some red flags with organisation at this place, they sent me the wrong MRI results and later the wrong operation report but the doc was so charming and lovely.
There should be recoreds kept of which surgeons have good success rates and how often the diseaese reoccurs after surgery etc. Otherwise we are all just guesssing who seems to be a competant surgeon.
if i were you I would look around and get some more scans and a second opinion.
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feel better soon! 
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