I was diagnosed end of February via laparoscopy. At first I was relieved to know that it wasn't all in my end but the past few months I've struggled now knowing that this is my life. They removed endo at the time of surgery from my bladder, recto-vaginal area and uterosacral ligaments left and right - they placed a jaydess coil at the time as I tried the mirena before and it made me suicidal it was not good for my brain! I have not really had any guidance since my diagnosis - it was very much like you've got this bye now. I'm under the gynecologist for a year and I did want to talk to her regarding my surgery so arranged a telephone call for it only to be a different doctor 🫣 I'm still getting quite a lot of pain with the coil and recently have been getting a lot of nausea, headaches, bloating, sweating etc etc. I'm on a phased return to work (I'm an RVN) but still struggling with this since my surgery. It's long hours on my feet. Just thought after the surgery I would be feeling much better and my condition would be easier to deal with but I'm still in chronic pain and don't really have a life as most of my days off are in pain on the sofa! Just feeling very deflated and thought I might get my life back and it's not really happened - very emotional and had to call in sick to with today as I've been crying over the weekend and just really down about it all. Any advice regarding how to mentally and physically deal with the condition would be great! Thanks all 😊
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EchoHex
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Sorry it’s getting a bit much at the moment. Are you due on? That could be making you feel more down than at other times.
What did the dr say? Was it one that was part of your op?
It’s not an easy disease to deal with and we get little, more often no, support from the medical profession yet it’s in the top twenty NHS most painful conditions. What pain relief are you taking?
Thanks for your reply. I finished my period Friday but I do get bad pms for sure! I've been off on annual leave so I think maybe I relaxed a little bit and my emotions have just come to the surface possibly?! Plus I didn't have a great weekend with pain/nausea.
I think it was a registrar that I spoke to but as far as I'm aware she wasn't in the surgery. I've been getting more help from my GP really if I'm honest!
Pain relief wise I'm on naproxen and omeprazole for my tummy - I often take it with paracetamol but sometimes that's not enough - I also find if I'm bloated and cramping that is just the worse combo so I try and stay away from certain foods if I can. I was on co-codamol post op but makes me drowsy so I don't like to take it unless I really need too plus I'm pretty fatigued as it is and I can't be drowsy with my job so it's a difficult one. I have queried pain relief before but from what I was told there's not really anything I can have more that won't make me drowsy!
I’d imagine it’s a combination of both, blessed hormones are the bane of our lives 🙄 don’t let GP say it’s anxiety though.
I take Metoclopramide for nausea, works well for me.
Sounds like GP is trying, registrars fob us off same as consultants.
There is Nefopam, it’s non opiate, but not sure if it causes drowsiness, it didn’t for me. GPs are a bit loathe to prescribe as it’s more expensive than opiates.
Have you had a blood test recently? If not ask for one and include thyroid, vit D, B12, Iron as well as general.
Thank you for your reply! I've made a note of Nefopam - thank you for that!
I've looked at metoclop - it says it may cause drowsiness do you find that? I have cyclizine hydrochloride but that makes me snoozy so I can't take it if I'm at work which is really annoying!
Yes I had bloods for loads of different things and all normal - got my appointment next week - I'm going to ask if I can be referred to an endo specialist - I'm not convinced they got all my endo from the surgery as I don't really feel any better 😞
It doesn’t make me drowsy that I’ve noticed. I more often take it pm so often tired by then.
Definitely ask to be referred, it’s possible they didn’t get all Endo and likely wouldn’t have touched the bowel. No reason why you shouldn’t get referral. Tell GP nicely rather than ask, don’t word it that they can do no easily. 🙂
Urine sample was all fine so that's good! My gp has referred me to a chronic fatigue clinic as I've struggled with debilitating fatigue for about a decade prior to my endo symptoms! My pain had been pretty good since I last saw her and I did ask about being referred to a specialist and she said maybe to wait a bit longer as she was worried it would bounce back as I'm on the coil etc
Having said that I have been having bad pains the last few days and I definitely think the coil makes the pain worse as it's a really sharp pain like being stabbed it's horrible. I'll see how I get on and see if it settles but if not I may consider having the coil removed but making sure I've got adequate pain relief! It's a hard one for sure!
Keep in mind with referrals that there will be a waiting list. Did you have a follow up from lap?
See how it goes but don’t put yourself through more pain, it is such a tough decision especially with the coil and not knowing how much it’s working or not.
Yeah it's so hard! Do you go on the coil and have all the nasty side effects or be on nothing and be in a lot of pain! Wish I just reacted to hormones better haha
You might not get side effects with coil. If you did try it make sure they’ll agree to take it out if it doesn’t agree with you, not expecting you to wait months and suffer. I never tried it, think my uterus was too inflamed as it was never suggested.
I am really sorry to hear that you feel this way.Have you tried lifestyle changes? This is what saved me after failed hormonal treatment and a lot of pain. It works better than anything I have tried and believe me I tried a lot!
Unfortunately, studies have shown that progesterone only contraception increases the rate of depression, so feeling low can be another side effect..
Hi thank you for your reply! I do think certain foods don't help with bloating etc so I try to have sourdough or gluten free stuff and I try to limit dairy - I was a vegan for a few years so think I generally just don't tolerate it that week anymore! It's funny because I never really suffered with the bloating before surgery but now I'm so sensitive it's so annoying!
I feel exercise would be good but with the fatigue I'm finding it hard and sadly my weight has always been a bit of an issue I'm just one of those people that seem to put on weight really easily which is really annoying!!
hiyah and hugs 🤗 for all you’ve had to endure and are still navigating. It’s not easy especially with trying to ease yourself back into work.
You may want to explore issues around progestin and progesterone resistance and intolerance ( two separate issues ) that may play an element in how your body is reacting. A percentage of us struggle with this so the progesterone route to suppress endo can be highly problematic.
Secondly there are lots of things we can’t control in the process but taking back agency where you can should make you feel a whole lot better. It’s not a case of either/or approach but taking from both. I found my way through this brain numbing thing over years of research and being an acupuncturist and nutritionist. I crawled through a lot of double blind studies and drew on my own knowledge. My conclusion works for me having followed “my disease thread “ rather than necessarily always adhering to the holy cows of standard practice. Getting myself into a better place to manage the disease has been the result. It’s not a cure but it’s a good strategy. Time moves on and now much of my approach also seems to work for others as a good adjunct. Some better than others but worth exploring?
To short cut all the brain bending I’d explore the following:
Katie Edmonds book Heal Endo
Pelvic Floor Physio based on hypopressives (try a gander at @corerecoverypt )
Hydration levels
For pain management strategies (along with additional medication input when needed ) Curable App. My GP gave me a six week free NHS trial of it but they do a two week free intro one for all so you can explore it without financial risk. I now pay a small annual amount to use it and it’s worth every penny.
None of these are the complete golden bullet but I am so much better and have a decent quality of life again.
Hi thank you for your reply! Yes I don't think I tolerate progesterone very well at all - I was on the pill from 13/14 just because my periods were so bad and I only came off it a couple of years ago - the gynecologist then wanted me to try the mirena so I did that but it made me suicidal it was awful - I rang the doctors and a sexual health clinic to try and get it removed asap but they couldn't fit me in for weeks so I had to take it out myself because it was literally driving me insane (it was very simple had it been more complicated I would have of course had to wait!) so when they suggested at the time of surgery to try again with a lower dose IUD I was skeptical - I didn't really say that it made me that depressed and perhaps I should have but think I was just clutching at straws - anyway I had the jaydess coil fitted end of Feb during my surgery and although my periods are better in the sense that they aren't as heavy and I'm not confined to my bed for days i am still getting all the other issues as before and some worse - so if I'm honest I'm not holding out to keep it but we will see I guess! Mentally I've not been as bad but I wouldn't say I was unaffected!
I will look at those things you suggested thanks very much!!
Oh gosh I've just come across this forum today because I'm also recently diagnosed and feeling hopeless and in despair
I was diagnosed in April - I found the whole laparoscopy and treatment quite stressful and traumatic with poor communication from the consultant and other hospital staff. I feel like I was eventually given this diagnosis after years and I've been discharged from gynae and had no contact with my GP. Just feel totally abandoned and I'm also currently on my period and haven't had any improvements with pain or my PMS symptoms.
I'm struggling to move forward with this, but knowing I'm not alone through this forum is providing some comfort, and some helpful resources too. Hopefully things get better for us.
Oh bless you! It's mad isn't it - I feel like I've got the diagnosis now so no one really cares? I'm sorry no one came to talk to you after that sucks!Have you gone back to your GP? It may be worth a go!
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