Symptoms returning 6 months post rectovaginal endometriosis excision

[BlueTit98]

Hi everyone,

Feeling a bit disheartened and wanted a bit of advice. I’ve had endo 14 years, in the last 2 years I have had 2 exploratory planning ops and one major surgery at the end of this March, it took hours with the colorectal team together with my surgeon. He did a brilliant job excising it out of my pouch of douglas, rectum, bladder, left ureter and the only bit left is on my diaphragm. I’ve had a lot of issues with my bladder and urethra since which I know was a risk and can happen so not too bothered about that but lately my pain has slowly been occurring more often and sharper in my rectum again and that horrible needle stabs and almost constant pressure swollen feeling is creeping back in my rectum and pain is more frequent in the same places as before in the abdomen. The fatigue creeps in with it like before not as bad but still. I would like some advice about how soon endometriosis can come back after excision in your experiences? How can you tell it’s back and it’s not just old angry nerves and muscles flaring up? Feeling a bit gutted. Thank you 💛

[lou840]

I feel a bit the same 5 months post op for excision rectal-vaginal endometriosis but I’ve recently started physio exercises and full time work hours again are tough so I’m putting some of it down to that. The fatigue still hits me which I’m thinking is to do with the adenomyosis but my stomach has recently been getting that heavy, pulling/ tugging feeling again that I so clearly remember before, I was chatting to some ladies on Instagram and it could be the scar tissue from the surgery. Bowel issues aren’t too bad although the constipation / diarrhoea every now and again did start again a few months after the op but no where near to the extent of before. Am really trying to focus on my diet again as I noticed some sugars are causing rh stabby pain in my bottom, I keep trying to keep a food diary to track it but forget!

Sorry my response isn’t that positive but saying all that I am glad I had the surgery as the rectal-vaginal nodule was causing me unbelievable pain and I’m glad it’s been removed! x

[BlueTit98 in reply to lou840]

Sounds like you’re feeling very similarly to me! I went to a conference about pain and endometriosis and they had an anaesthetist in who heads up the pain clinic and she explained that because our nerves have been so sensitised by the chronic pain and our muscles are used to tensing around the site of pain they can can flare up if we have a bad night’s sleep, lift heavy etc. Hopefully it’s just that or adhesions. I’ve definitely got adhesions from the scope on my left because the gp could move it around! I completely agree my pain levels are like a 3 whilst this time last year it was unbearable so very glad I had it done. Hopefully things will settle down for us soon 💛

[StefaniaJW]

1) Endometriosis cannot come back so soon. Either some of it is still there because they didn't remove it or the pain comes from the extensive surgery or from the numerous surgeries you had to undergo (here in my country exploratory surgeries are not performed at the risk of causing further adhesions). What were you told during the follow-up? I also wanted to know whether you had surgery at a BSGE centre, with a Nancy Nook surgeon and team or what.

2) Are you taking any hormones? Have you ever had your vitamin D checked?

3) I suggest you start looking into other options to support you such as lifestyle changes (sleep plenty and well, at least from 11 pm to 8 am, spend much time in the mountains in the summer or by the sea, do some light walking, yoga, swimming or whatever other activity might help -even just standing up from the desk and moving around or stretching every hour or so. See an osteopath, get a tui-na massage done or get acupunture. Try different things until you find relief), dietary changes (eat plenty of fresh vegetables, fish, some free-range eggs and grass-fed meat as well as some in-season fruit, nuts, coconut, some healthy grains like amaranth and quinoa, sweet potato and even some corn or rice if tolerated. Avoid smoke, alcohol, all refined carbs like pizza, bread, pasta and all dairy, anything fried or processed and preferably coffee as well). Supplements such as selenium, zinc, magnesium, vitamin B6, folate and NAC can help immensely (the first two support the gut and magnesium helps empty the bowel).

[BlueTit98 in reply to StefaniaJW]

Hi!

Endometriosis definitely can come back and spread very rapidly, one of the women in the support group had to have another surgery 5 months after ablation and it had spread like a wild fire. Mine went from being about the size of a plum in one of the areas to a beast weighing 4.5kg in the space of 4 months, despite hormone treatment and everything else I do. After a certain point it creates its own oestrogen so it just keeps growing. I had excision with one of the best surgeons in the country together with the colorectal surgeon and their teams at a normal uk nhs hospital.

Yes, have been on a combined pill for over 10 years. It’s been Yasmin for the past 2 years or so. Can’t take anything like Zoladex because of strong line of osteoporosis in the family.

Oh absolutely I agree. I don’t drink, have caffeine or smoke. I’ve cut out dairy and limit how much gluten I have. I mainly have chicken and fish and very rarely have red meat but only buy free range organic grass fed if I do. I sleep around 8 hours a night. I have dogs so daily am out walking with them, I do see a difference if I have been working too much so my partner has done it without me. I’ve been referred for a free gym membership by my gp to get some personal training to help get my strength back, as I’ve still got a little belly button hernia from the surgeries. I’m a youth worker so am up and about most of the time, days I have to sit a lot I do find more painful you are right. But my hours are very long. I have an 11 hour day on a Monday and a 10 hour day on a Thursday and don’t get home until midnight on a Friday in addition to working the rest of the days and sometimes big events at weekends. It is definitely much harder to keep energy levels up now that both jobs are back as one of them in term time only. We don’t really have mountains here so much but I do try to go to nature in my free time when possible, I’m with you there I love the sea and find it very soothing and healing!

Thank you for all of your suggestions and advice, I will start taking zinc regularly and will start using my magnesium spray. I also bought tumeric supplements so in the first week of that. Will see how that goes.

[StefaniaJW in reply to BlueTit98]

Yes, selenium is as important as zinc. Ablation surgery is extremely counterproductive and should never be performed to remove endometriosis because endometriosis simply doesn't get removed if ablation is performed. I hope the excision surgery went well.

I honestly do not know what else to suggest. These are all the rules I follow and my endometriosis hasn't spread that much in the past 6 years. Hormone treatment I found actually made my endometriosis worse as soon as I got off it and oftentimes is not enough to keep endo under control. Maybe discuss the chance to take Visanne?