My very first time to ever post anything, anywhere so I hope I do it correctly! I had surgery 10 months ago for stage IV endometriosis (my ovaries were engulfed with big cysts & various sites scattered around pelvis). Unfortunately symptoms are back already and I'm truly suffering 😢 DESPERATE bloating & pain. I was taking a codine/paracetamol combo & ponstan but as they did nothing for me consultant changed to Diclofenac suppositories, Tylex & oramorph. So far I've held off on the oramorph but the difene / tylex not great. I'm afraid that I'm running out of options... and trying to avoid A&E. What do you find good?
As for my bloating oh my Good God its bad. I go from near flat to 9 months pregnant within 2 hours- no joke! Gynae consultant said it's one of worst cases of bloating she's ever come across. Any ideas to help there would really be appreciated.
Last but not least, does anyone have endometriosis in their lungs? I have all the signs of it- unexplained collapsed lungs, shoulder pain & pain taking deep breaths. All these symptoms only occur during my period.
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Roellen
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Hi there, I'm so sorry you're experiencing this. I had a nightmare with undiagnosed Endo stage 4,perimenopause, fibroid and so on all in the last 12 months. After all 2 operations I had the bloating came back in 2 months. It turns O had SIBO which is something really difficult to treat and goes along allot with endo.Chevk yourself could be this. I go from flat to 7 months pregnant with allot of pain and have difficulty to breath. Ho and check. Sending kisses.
Hi, So sorry to hear that you are in pain. I am stage 4 too. I recently started an anti-inflamatory diet and have found that it has helped to lessen the pain. It has not removed the pain totally but has helped substantially . It means I can now take less serious medication like ibrupfen rather than naproxen which I was on. I also found wearing a tens machine very helpful in pain management. Hopefully this will let me post the link here. This may help you as well: amazon.co.uk/Beurer-Menstru...
take the oromorph. And if you aren’t already just take everything you have been described in the doses prescribed, but try and spread them out through the day so you have something every few hours.
Also the endo diet (anti-inflammatory diet) can help massively.
You should also be able to go to the pain clinic again and take in a written copy of what you are taking when, and they can see if there is a better way of taking them or something else that might work better.
Also get back to your gynaecologist and see what they suggest in terms of managing your cycle.
Hi Roellen , I am so sorry to learn of the issues you are facing, unfortunatley so much of it rings true with me, especially the insane bloating, from nowhere! megiiva I understand. For me, it's not period dependant but it is clearly linked to pain.
Despite the awfulness of your situation, that's a great first post and has got great responses. So thank you for sharing 💜
So as background standard pain relief I found the central acting pain relief way more useful and less issue bound and gut disturbing ( Nortriptyline rather than Amitriptyline as has fewer side effects) . The opioids actually contributed to my gut bloat, seizing of gut function and its permeability 😳.
My level of Omega 3 was so low ( often the case ) and Vit D I used for gut repair, anti inflammatory, and hormone regulation. I quickly found my nerve pains significantly reduced.
Some people find CBD oil helpful but I found PEA with lipisperse way more tolerable and it has an overall effect on reducing mast cell dysfunction as well as soothing the gut. My pain is well regulated now and my bloating has gone right down . It’s taken other things like adjusting for lactose intolerance and removing potatoes whilst upping my nutritional intake to help manage the underlying disease process too. You might find Heal Endo book by Katie Edmonds a useful resource and means to understand some of what’s happening. X
Oh my, thank you for taking the time to reply! I don't fully understand it all (are you a nurse/work in medical field?) but will look into all what's worked for you. For now I would be glad to deal with pain & bloating. In the past my CA125 was reading in the thousands but I was told that is often the case in endometriosis... would you know if that is common?
Found out 🤣. Was an acupuncturist ( specialist in infertility and pain relief during labour) as well as nutritionist and practitioner in AK etc . It helps navigating but it didn’t save me from inadequate treatment or diagnosis.
Ca 125 is a common finding for those of us tested but it’s not across the board and doesn’t appear to be collected in a useable form of data. So can’t really answer that other than it’s a frequent player here 😎Ca125 is interesting but it is present with a number of different problems. Not just ovarian cancers. So it can be useful as a preliminary screen. Some studies seem to indicate that it can be used to stage the level of endo as well but there’s not enough data yet. Some medics dislike the fact that it’s done with more women because it gives a scary result but it is simply a screen that indicates a process going on that doesn’t only happen with cancer. The information now emerging from miRNA studies is that a lot of the signalling and tissue behaviour shares similar or same pathways as cancer. Even though “it’s not”. As an outsider I think this is great information because we can understand so much more , affirm women’s actual experiences (!) , look to better more effective less toxic treatments and really move forward . Not before time.
The studies I was looking at not only looked at the new miRNA salvia test but another one that took a combo of Ca125 and other miRNA bio markers as indicating endo much much earlier. It might be they can begin to effectively label the various forms - so Progesterone resistance is being seen at this signalling level. The dialogue has been so firmly rooted in excess oestrogen for so long that the inadequacies of that pathway of care have become part of that misery. In acupuncture we always say where there is excess you need to look at its equal and opposite deficiencies and tackle that. For many of us the progesterone isn’t effective and can cause a lot of problems . Sometimes that’s progestins or even body identical. Signalling issues can be tackled ( look at insulin resistance with stress issues, diet change, exercise and treatment like metformin, Berberine etc )but it’s finding the key 🔑 .
End of day I know I ended up caring for my “ broken body”‘in the way that lots of the self care routes forward now have ended up using. I think we need to trust our gut instincts a lot more. Our body is trying to make us understand how we can try to support it if only we can translate 🤣. It’s why I love Katie Edmonds book. There’s alot of well grounded info and guidance to work your way through and embracing the don’t be a overtrier and perfectionist. At the endo of the day ain’t my fault my body chats differently…
Getting the pain under control is so important its so difficult at first.
Personally i take paracetamol 4 x a day
Amytriptaline 25mg 2 x per day
Diclafenac suppository 2 x per day
Codein either 15mg or 30mg depending on pain and i take that alongside the paracetamol. Codein constipates me and can cause worsening symptoms so i usually do 2 days on and 2 days off.
Cyclazine (anti sickness) 2 x per day
I'm also on prostap injection. With HRT,
One thing for me is if i dont take HRT with the prostap it causes me real bad symptoms of seizures, bone pain, memory loss etc..
I'm waiting on a tens machine & also my gynae has suggested nerve blocker injections or muscle injections which are given by the pain clinic so worth asking about also.
I feel whats worked for me is being on point with the pain relief & taking it religiously even if you dont think you need the paracetamol just keep it topped up.
As for oramorph i had a bad time on it, but can work for others, if you have gastritis or sensitive stomach i would say be mindful as can cause real upset and nausea which can take a while to settle down etc...
Not sure to the extent that it can help but Peppermint Tea helped me with bloating recently. Following a laparoscopy I felt and looked about 5 months pregnant. The tea really helped throughout the day.
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Desperate for pain relief. 
Endo Pain/Inflammation
Endo nightmare!!!
UTI’s and Endo
