Hi everyone, I was newly diagnosed with endo from a laparoscopy in May last year. I’m struggling to know where to turn with the ongoing management of this, I was told I didn’t need a follow up after surgery and have no specialist team to contact with any queries.
I was on holiday last month and a stranger congratulated me on my pregnancy (even though I’m not pregnant) and it made me realise how abnormal my bloating is and that I need to work out what’s causing this so I started the endo elimination diet and contacted my GP. My GP said he thinks my symptoms point to IBS even though I mentioned my endometriosis diagnosis this was not discussed as a possible cause. My GP is going to do a stool sample to check for inflammatory markers and a blood test for coeliac. It would be nice to cross a few other possible causes off of the list but I’m unsure how much knowledge GP’s have in regards to endometriosis.
I’m worried about the condition progressing and me not knowing about it. It’s controlling a lot of my everyday life. Sex is painful every time, I’m getting thrush all the time but typically had a negative test result when I involved my GP in order to get better thrush treatment, and now the bloating. Does anyone else suffer with constant thrush?
What usually happens in regards to monitoring endometriosis progression? Is there such a thing? And is it normal not to have access to a specialist once you’ve been diagnosed with endo?
My head is so muddled, and the pregnancy comment has had a huge impact on my self esteem. I am staying off of caffeine, alcohol and sugar now as much as possible and do timed eating most days. Any advice would be much appreciated.
Thankyou
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Tigerlily5
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Thankyou for the reply framy, no I haven’t tried kefir! I did previously try an actimel each day but stopped it at the start of the elimination diet! Will definitely give kefir a try Thankyou 😊
I'm so sorry for you having to cope with this and that horrible comment. You described how I was left when I was diagnosed too and the pregnancy comments are just the last straw. So you really need a referral to a gynaecologist who knows about endometriosis and you need to watch your blood sugar/hormones. If you find you are always reaching for the carbs or highly sugary foods then you know you need to stop. There's so much I wasn't told about after my diagnosis and that was in Ireland 2018 so I'm sorry you are in a similar situation. Hugs.
Hiya Thankyou for taking the time to reply to me 😊 It really does feel after the laparoscopy that you are just left on your own - a quick conversation with the surgeon where you’ve barely woken up from the anaesthetic and that’s it. The questions start adding up! I’m trying to be careful with what I eat/ drink but it’s hard to know if actually the endo belly is pointing to it returning again even though I have the mirena coil. I’ve read about a Candida diet too and am wondering if with endo some people are just riddled with Candida and I’m one of them! Thanks for the heads up I think sugar/ carbs is definitely related to this aswell as alcohol, caffeine and gluten. After the GP’s tests come back I’ll push for a referral to gynae, it would just be nice to have a point of contact tbh to know what needs further investigations and what doesn’t. I don’t want to be complacent and let it get worse over time. I’m sorry to hear you were in the same boat, it’s horrible to feel like you have no one to ask, friends and family just think it’s fixed after surgery. I hope you’re in a better place with it yourself now?
Completely agree with you, I remember waking up and being told 'oh its endometriosis' and him walking off to next patient. I remember going home wondering what he meant and my husband googling it.
I was diagnosed coeliac 20yrs ago and so gluten free has been the normal for me ever since. Alcohol is also out for me and I follow the Mediterranean diet as I find it works for me. Unfortunately endometriosis is something where we have to find what works for us as I've learned there's no universal one fits all solution.
Aww that’s absolutely awful you must have had so much going through your head. Ah I see okay, I think after the tests I will probably go back to being gluten free, I’m bloating from a sandwich as we speak 🤦🏻♀️😂 I’m glad you’ve found what works for you, looking forward to getting on top of it the best I can! 🤞🏻
I'm fairly newly diagnosed so not sure how helpful my pointers will be lol but something that's really helped me with endo belly is twining turmeric tea it's also got orange and star anise on it and actually tastes really nice and deflates my stomach like nothing else I've tried so thought I'd share my Limited knowledge haha
Hey HT267 that’s amazing I’ll give it a try Thankyou! Been thinking of trying the peppermint tea too or the peppermint oil capsules as I’ve heard that’s good also! How many of those teas do you have a day? And do you drink them before a meal? Oh trust me my knowledge is also limited and mostly googled haha
Sorry you're going through this, endo belly is horrible.
I found the endo diet very helpful for controlling pain, taking (a high dose of) Pycnogenol helped a lot too, but it didn't do much for the bloat.
IBS can cause bloating, so can bowel endo and with me it only showed up on an MRI
If your current treatment isn't helping, I think it's fair enough to push for a referral to a gynaecology service, but I don't think they have to monitor the progression unless there's deep endo or large cysts.
Hiya thanks for the reply it is awful! My mum said I looked heavily pregnant throughout the whole holiday but I wasn’t doing any diet at the time. I gained 11lbs (which was mostly water weight) and was back to my normal weight after a few days of returning. I’m always fine in the morning then it goes downhill from there. I don’t find it painful I just get the uncomfortably full feeling after having a small amount of food and just need to unbutton my jeans! Definitely worse on my period. I’ll wait to hear whether anything comes back on the IBS side of things then. What other symptoms were you getting with the bowel endo? It is worrying that you have to just go with your gut on this to know whether it’s progressing or not! I don’t want to waste NHS time but in my understanding if people have endo belly that means there is still endo present somewhere to cause that bloating which needs to be removed?
Initially the bowel endo just presented as painful BMs and altered bowel function when having a period. Years later it progressed to having sharp rectal pains.
I had exactly that with the bloating - generally ok in the morning and then getting progressively worse. I ended up having to wear pregnancy clothes while waiting for surgery.
For me, having surgery sorted it out and I haven't had bloating since then (6 years ago). It might have been the bowel endo, or just that I had so many adhesions tugging on things when I moved.
(Having said that, endo does tend to regrow after conservative surgery, so they advise using hormone treatment after, like the coil)
You're absolutely right to get this treated on the NHS - I wish I'd been more assertive in the past.
That’s interesting as I always get more gassy during my period and have constipation - the rest of the month I’m fine.
That must have been awful for you to have been suffering to the extent of needing maternity clothes, I’m so sorry you had to go through that. It’s good the surgery has kept things at bay ever since.
I had the mirena coil fitted during my laparoscopy and naively thought that would sort me out for years to come. 10 months later I’m surprised I’m in this position. Perhaps if the other tests come back clear an MRI would be able to rule out progression involving the bowel.
My GP probably thinks I’m such a hypochondriac, but those consultations are what lead to this diagnosis in the first place. I’d rather try and be preventative whilst I can as our health is so important!
You need to sort your diet out, hence the bloating. You should try an anti inflammatory diet. You may also benefit for trying a gluten free diet for a couple of months. Check out endometriosis.co.uk as they specialise in this sort of thing and may be able to help.
Thankyou, I did the elimination diet and found it did help a lot but with the tests I’m waiting for I need to eat gluten for 6 weeks. After that I’ll be going gluten free for sure as I’m pretty sure it’s gluten that’s the issue, no problem with dairy. And Thankyou for the link I’ll have a look
I was diagnosed early last year with endo and have also had a similar experience to you by being left to manage symptoms etc...the consultant actually said my GP can continue to manage my symptoms! Problem with that is my GP doesn't even register I have endometriosis 😏 and repeatedly states it's IBS...yet it's definitely endo with a full diagnosis. I did contact my old gynaecologist and had further surgery at the end of last year where the endo tissue had regrown but in other parts...
From my experience of researching and speaking to other endo warriors, that diet can have a massive impact on endo...i have endo bloating around my cycle time however I was advised to stay on contraception continuously for 3 month period, then break for a week or two then continue. I found having cut out most dairy products helped and drinking lactose free milk has reduced my bloating, i drink a lot of herbal tea (camomile, or Twinnings Immune tea) helps reduce bloating...I have reduced the amount of gluten and as much as it's a struggle tried reducing sweet sugar foods.
Hiya thanks for the reply hmm okay then it sounds like it is the norm which is a shame! My GP is exactly the same at the moment ignoring my diagnosis and putting it down to IBS! So I will put my foot down if that’s not the case and push to be seen by a specialist! I said on my e-consult I was happy to speak to any GP but perhaps next time I’ll speak to my own GP who got me the diagnosis in the first place and see what she says!
What symptoms did you get to know it had regrown? And did you go straight for a laparoscopy or did they offer an MRI? I know the lap is gold standard for treatment but if it is bowel related with the bloating etc I’m hoping an MRI would be a good indicator before any surgery. I’d hate to have another lap if I don’t need it! I’m still getting back pain during the time of the month too. I’m trying to think back if these symptoms ever went away in the first place after the surgery, I really didn’t take much notice with the bloating at first. I had the mirena coil put in during my lap and still get all the symptoms, but I think it thins the lining of your uterus which is how it prevents the endo from spreading (if that’s correct!).
It’s interesting they want you to have breaks on your pill you’d think they’d want to prevent your periods as much as possible but I’m no expert so I’m sure there’s a reason!
Will definitely get on it with the diet again, once you get into a routine it’s okay the hard part is when you go out with friends or there’s treats at work!
So here's a bit of context or back story. I waited for years to be referred to a gynaecologist, my GP did every other test and then just said its IBS even though my tests and report stated it was a gynaecology issue. I paid to see a gynaecologist privately for a consultation to explain what I'd be experiencing for years. Now I was put on the contraceptive pill when I was 12 years old, I started my period at 10.. could barely climb the stairs and was in agonising pain for most of my life since starting my period. I've been on various different types of contraception from multiple pills, injections and implants. 10 years ago my GP decided to put me on the combined mini pill and to only take a week break every so often. So, the summer before covid, I went over to The Spire for my consultation with a gynaecologist who sent me for various tests and scans which came back abdominal with lots of scars. The gynaecologist wanted to treat me under the NHS as not only had i been fobbed off most of my life but also for the fact I worked and studied at an NHS hospital...problems occured: Covid happened and I ended up waiting 2 years! I was in so much pain, that not only affecting me mentally but physically to the point people would assume i was pregnant..i had bloated so much in 2 years I looked 6 months pregnant yet I wasn't. I contacted the consultant at The Spire to request the surgery privately but on finance as I don't have £4,000 to pay for surgery. (Which I am still paying back). In February 2022, I underwent a laparoscopy and had signed a form to have a hysterectomy if it was needed. Now I'm 35 years old, no children yet...and want one. It turned out I had serious scaring and was bleeding internally, from a colonoscopy which caused a tear in my bowel this caused my bleeding and bloating. I had endometriosis tissue removed from outside of womb, tubing, ovaries, liver, bladder, bowel, stomach. (Good news: my womb, tubing and ovaries are intact now and in good condition- so can try to have children one day).
I didn't choose to have surgery again...my scans showed further issues, my symptoms hadnt reduced and my pain was uncontrollable to continuously being fobbed off by GP's. I was contacted by an NHS hospital saying my surgery date had come available since covid, I explained to the staff what was going on and they contacted the gynaecologist consultant I saw at The Spire who suggested another laparoscopy, which occurred in October 2022, showing endo tissue all the way across my pelvis, it was also the advice of the gynaecologist to take a random break for a week every 3 to 6 months to allow my body to release any blood.
Symptoms were different, i still had bloating and pain but I started experiencing serious vertigo which started causing blackouts and sickness. I now have to take medication for vertigo and more sickness medication to reduce the symptoms. Today however had been one of the worst flare ups since surgery as I stupidly drank a caffeine coffee with pure milk ( I've not had proper milk for over a year, normally have lactose free or milk alternative like soya, almond is yum 😋) which caused a flare up probably also because I'm under a lot of other stress doesn't help and close to the break in the contraceptive.
If you can have scans and other tests then do it, having more surgery is very scary but some times avoidable. I'm struggling with diet that suits endo as everyone's is different... no two endometriosis is the same, so everyone reacts differently to certain foods. If you have any advice please tell me.
Thankyou for explaining your story, it sounds like you’ve had a really hard time with it all. I’m sorry you had to go through all of that! I had problems with periods when I was younger too, I stood up in the bathroom once and fainted from the pain but thought nothing of it at the time!
It’s really sad that GP’s don’t seem to be taking this condition seriously. So your endometriosis came back in a matter of months! I’m sorry your symptoms have been so awful, amazing news that everything is now intact and you can try for children.
I’m 30 and am in the same mindset that I want to try for children now and have booked to have my coil removed but am terrified that this will progress the endo as soon as I have the coil out!
Caffeine really is the devil, I drink decaf only now unless I go to a friends house. I naughtily went on a night out on Saturday and have been huge ever since, I bloated up massively from a small sandwich today! It’s so hard to get the balance of being healthy but not miserable.. I love my fast food!
I’d 100% recommend the endo elimination diet if you google it it goes into such detail and it really helped me. I was the thinnest I’ve been in probably 10 years. Kept a food diary alongside it and measured my abdomen morning and evening each day. I’ve put my bloating mostly down to gluten.
I think I’m also going to focus on introducing plenty of good bacteria from kefir and possibly some acidophilus (live cultures in capsules) and focus on taking multivitamins etc. people have recommended peppermint tea/ peppermint oil capsules for bloating and twinings turmeric tea. Tonnes to try! But also just focus on eating clean, minimal processed food plenty of fruit and veg and minimal red meat.
I’m also sorry as all of my replies are ridiculously long 🤣😊
As others have said, diet can make a difference to endo symptoms and bloating and I definitely found it helped manage my symptoms. We all react to different things, so sometimes it is a bit of trial and error to find out what helps you, but for me sugar and gluten were my main triggers and coming off alcohol and caffeine helped too, as well as eating more anti-inflammatory foods like oily fish and fruit and veg. Good luck.
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