I had my second laparoscopy in November and endo spread ☹️ . I need your opinions or advice because for the past two 3 weeks I have been in crippling pain again and painkillers yet again aren’t doing anything. I’m apprehensive about going to the docs about pain to be either fobbed off or referred to gynae for them to do nothing as I had lap in nov.
What do I do? Do I go for it and push to be referred again? To see what other options there are? I’ve tried all contraceptive methods including prostap and hrt.
Xxx
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louisepercy2000
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Hi. They removed a ruptured cyst. And removed endo from multiple places. I don’t think it was an endo specialist think it was just a gynae surgeon. After my lap no pain relief was prescribed basically was told ‘well of it comes back get in touch’ lol
I’d go back and ask for MRI as well. Were you discharged or able to go direct to gynae. If you have to go through GP, ask them to arrange MRI you can save some time.What painkillers are you taking?
Morphine for when the pain is bad but it never works!! They discharged me straight after my second op in nov. I’m trying to get referred to gynae on Monday but I will ask about mri. Thank you!
I’m currently taking 100mg Tramadol (originally through pain nurse at A&E) four times a day with paracetamol, Amitriptyline up to 50mg at night, Pregabalin two 75mg twice a day and Oramorph as back up. Sometimes it’s import to take things regularly. If it really kicks off I usually need a couple of doses of Oramorph. The pain consultant and GP think it’s residual nerve pain hence Amitriptyline and a Pregabalin. When I’ve been active it’s several hours later that it gets painful, personally I think adhesions still there but who knows.The endo uk website has loads of info on getting the best out of a consultation.
Make sure you ask GP for a referral to specialist centre not general gynae. The NICE guidelines are good for this.
Sorry to hear you're experiencing so much pain. One of the things I learned after a long time is to take pain relief at the first sign of pain. I used to wait til it was getting bad and then taking pain killers, but apparently they don't work like that. A friend of mine who was a Macmillan nurse explained how to take meds earlier and this has helped a lot. They work a lot better that way. If I leave it until I'm in significant pain then the pain meds don't do anything. On the other hand, you might be in the small percent of folks that morphine doesn't work for (I don't take co-codamol for that reason - it does nothing). So, if you're taking pain meds properly and they are doing nothing, I'd go back to see your GP and it may be worth a visit to the pain clinic. Btw, I also use a tens machine to help with some pain and have taken note of foods and drinks that can make it much worse. For instance, I now don't drink more than 3 cups of green tea in a month. If I do, the pain is beyond terrible. Learning about what works for you can make it easier. Hope you get the help you need soon!
I have had one laparoscopy and it was horrible to say the least - I had shooting pains, UTI’s and was put on meds for women who gave birth naturally to babies!
I remember just crying in the spare room on the phone to the doctor, who clearly thought I was crazy.
Anyway, about a year ago I cut out dairy and meat from my diet - oh my god what a difference. I’m not saying that I don’t give into temptation every once and a while but on the whole endo problem is almost* a thing of the past (I’m having fertility issues).
I’m not saying this is a cure, but it helped me.
I tried everything - gluten free which made no difference, vegan and gluten free - unsustainable, then I went back to my old habits as I thought what’s the point. I didn’t go any longer than 6 weeks.
Then last year (around NYE 2019) I saw a documentary on Netflix called The Game Changers and that was it...
I hope you get the help you need, nothing is an overnight fix for this horrible disease and until they know what causes it we are all in the same boat.
I was admitted to a&e last night 4am so not long after I submitted the post. I collapsed and didn’t know where or who I was. Vomiting, shaking and crying in pain. I’ve been in pain due to endo for 3.5 years now, and that was the worst pain ever. Anyways, urine test= fine, heart rate= high, bloods=fine BP=low, ultrasound= normal. Sent me away with NO medication! I was screaming in pain. They said they’d write to my GP and ask to be referred to the same gynae I had in nov, and have are writing letter to Refer me to the chronic pain unit for lifelong medication. God knows how long that’ll be... feeling hopeless
I am so sorry to hear this, sadly you have to fight to get any help these days.
Keep fighting, you deserve to get the help you need. Please don’t give up hope.
I remember thinking I was on my own, I didn’t tell anyone (family, partner) about the pain - I hid it because I was ashamed they’d think I was crazy or it might put my partner off me. They still don’t know what I went through to the full extent, I felt broken inside.
Since switching to plant based alternatives (which are pretty decent nowadays) I am virtually pain free, my periods are lighter and I don’t spot - but the damage it has already caused has made me struggle to get pregnant.
The only time I take pain medication now is when I get my period, on the second day when the flow is slightly heavier.
Again, I don’t know if it works for everyone but it’s made a big difference for me.
Hi, how are you now? If need be go back to A&E and insist on some decent pain relief, don’t let them fob you off. If need be print out info that relates to how badly women with endo are treated, there’s parliamentary stuff and gov. Ask to see a gynaecologist, there will be one around. They need to make sure you are comfortable and coping before sending you home. I had a battle a few weeks ago. If they aren’t doing anything ask for the department or hospital manager. Also ask for the name of the chief dr in A&E. Names carry weight for later and will make people think.
Please don’t put up with the pain when the system is designed to help and they have ethics to abide by. 🙂
Feeling somewhat better than when I went in pain wise. I had a complete breakdown with the gynae dr. She suggested pregnancy :/ however also mentioned not unless I’m ready. I feel at the age of 20 I’ve had to mature so quickly since being diagnosed in 2018 age 18... pain changes you. Hopefully gynae get in contact ASAP. I can’t keep getting fobbed off when I’m screaming in pain ☹️
I would definitely look up endo diets and anti inflammatory diets. I discovered them accidentally through breastfeeding my little boy as he was allergic to so much and I after a few months I noticed I’d started to feel better - I even broke into a spontaneous jog! Now I avoid dairy, nuts, red meat, gluten and processed food. I’ve reduced sugar and caffeine to very minimal amounts too. I have a couple of different problems though so you might find just dairy free helps. The problem with them is, because it’s not an allergy, you don’t get instant feedback from your body that the food is bad so it’s easy to eat something once and think I’m fine but a couple more times and the pain is back!
Hey I’m sorry to hear about this. I definitely agree with everyone else that changing diet is important. Also are you on contraception. I’m only ever in pain when I bleed and when I do bleed it’s ridiculously heavy. So I’m on norethestirone 10mg every day and so long as I take it I have no period and no pain. Although I do start to get break through bleeding. Maybe suppressing your period may help.
It sounds like you were treated by ordinary gyane and they did ablation(just burn tissues).It is very high chance that endo come back again,after my 1st ablation under gernal gyane endo came back just in 4 months.You have to go back for further investigation eirher MRI or scan if its find endo appears again, you should push your gp to reffer you to a BSGE(Endo specialists) ,you can google it and see which is the nearsest endo centre near you and its reviews.Any other question,happy to answer🙂.Take care
My advice would be find your nearest BGSE centre and get referred there. For this level of pain you need a specialist who knows what their doing and what they are looking for. If you saw a general gynae before they may have used ablation on your endo which is a laser which would have only taken off the top layer of the disease and not cut out the root bit like a weed in grass or an iceberg. If they used a laser this would have caused scar tissue which is more painful anyway. I had laser on my first as I was naive then and the recovery was more painful that my 7hr excision surgery which removed everything.
Do not be apprehensive about seeing someone they are not living your life so what right do they have to tell you how you feel. And to be honest to send you away in pain with no pain relief isn’t really a good way to do their job. But I know they are struggling so don’t come at me ppl.
Sadly we have to push and push to get what we need with this disease but just keep going when you have the energy. Because a&e visits are no life.
Thank so so much. A few months ago I googled my nearest BGSE centre and it was 10 mins away in the city centre. So it’s close thankfully. I’m going to ring up Monday and demand to be referred by a doctor as I was in a&e AGAIN for the pain.
Good for you and if the gp won’t then find another gp you deserve to be treated by someone who is going to believe you and do what you need them to do. I sometimes find women are more sympathetic although my eventual referral was a guy and my amazing consultant was a guy so they aren’t all bad 😉😉
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