Endometriosis UK
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Why do i feel so ill?

So my story...

Never had a problem with periods or pain, was on the pill for a few years and no problem. Suddenly in December I got period style cramps and severe lower back ache but no period as wasn’t due. I was put on heaps of anti biotiocs and pain killers as nobody knew why I was in the pain.

I got referred to my gyne who didn’t suspect it was too serious but agreed to do the laparoscopy to put my mind at rest. Turns out that I had the smallest smallest spot of endo on the wall behind my left ovary. She showed me the pics and said it was barely even stage 1. It was treated. Now almost 2 weeks post lap I’m groggy, no energy, constipated and aching just like before. The gyne said it’s all in my head. Nobody understands this pain that I’m in. Gyne said last night to just go away and enjoy life, endo is gone and can come back but it’s all gone and everything else was perfect. Also I’m banned from painkillers. I’ve had an MRI, Ultrasound and tonight seeing a gastroenterologist.

What I’m so confused about is why I feel so weak and lifeless if she’s cut this tiny piece of endo not worth mentioning out of me?

Will it go with time?? I have to go back to Uni and feel that my life is over and I’m only 20.

Someone please give me some positive news or answer my questions.

Nicole x

18 Replies
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Sorry Hun. It's a terrible disease and it's not according to how much endometriosis is in your abdomen. The smallest amount can give the worst pain. It also takes time to recover from your op. I'd say give it a few more weeks. Hopefully you should feel better soon. Excess eostrogen makes endo worse so you might want to look at what pill you are using.

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Hi thanks for your reply. I’m on the combined pill and my gyne said to tru-cycle this to try keep it away. How long did it take you to get over a lap? And I don’t understand why the pain persists

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No worries. Well they have Lasered your insides. I'm pretty sure that the delicate tissue inside takes time to heal from the burning and lasering. I had drilling into my ovaries as well and pain in them for weeks after. But it did settle down and I had very little pain with my cycle for 3 years.

Hope you get better soon.

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Thankyou for your Information :)

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It takes at least three months to heal internally after a lap and fatigue may just be your body saying that it is working hard to heal. Some people are more sensitive to the drugs in surgery too. After both my laps it took me 5 or 6 months to feel even vaguely normal again.

This describes the healing process

centerforendo.com/is-my-end...

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Thankyou, that article was very helpful :)

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Thanks for the link. Very informative!

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Welcome xx why they don't tell you this stuff up front so you know what to expect is a mystery to me.

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My gyne was just very frank about the whole thing. She is very good at her job but dismissed the endo really as she said it was less than minimal so not to worry about it and we made a prevention plan. She said the remainder of pain is in my head, I’m staying hopeful but it’s difficult when I’m constantly aching :(

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Sorry but your gyne and my gyne would definitely disagree on this! My gyne said the amount of endo that's found is irrelevant to a persons symptoms/ pain. He explained it like this, "when you have an ulcer in your mouth how big does it feel?" My response was something like "it usually feels a lot bigger than it actually is." He then asks "is it painful?" I respond "yes it can feel very painful." He then points out "but it's actually very small?" I nod in agreeement. He said it's the same with endo, the amount of endo and the pain felt by an individual aren't connected. Someone with severe endo can have little to no pain and vice versa. What is important is the persons quality of life.

Are you able to see a different gyne? This is a really difficult illness to live with you need people who will support you and help you find solutions not make you feel like your overreacting when you ask for help. You know your body better than any doctor, remember that and know you deserve better.

Stay strong hun 💛

Xx

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Thankyou for your response. I’m trying to stay positive that the pain will go but I’m so scared and nobody understands me. My parents just think it’s gone because it was removed - not sure why that isn’t the case. Everyone just thinks I’m going to get over it but I’m petrified and don’t want to live on painkillers for the rest of my life :( x

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It's good to think positively but I can sympathise it isn't easy when people don't understand, it chips away at your confidence. Maybe it would be good to educate your parents on endo, there's lots of useful info on the website below.

endometriosis-uk.org

From understanding the disease to FAQs. (I asked my manager at work to read some info from the above website and he's been a lot more sympathetic since!)

They're probably just trying to make you feel better in their own way but it might not be what you need right now. I would sit down with your parents and tell them how you feel. Tell them you're struggling and you're worried. It's a lot to go through on your own and they need to know how hard this is and support you.

You probably will feel better in time but right now you're not and that can't be ignored.

Im so angry at your gyne for treating you like this. Pain is pain no matter what the cause it should be taken seriously.

Big hugs xx

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My parents just get so frustrated and shouting at me saying that I don’t have endo, it’s gone and to get past the pain. My mum just says she knows people who’ve had it and got over it so I don’t understand why I’m not yet. I keep getting told that the pain is constipation and from a mix of all the antibiotics and tablets I’ve been on and that’s what my gyne and gastroenterologist have said the pain is down to. I’m just frustrated and don’t know what to do.

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Im so sorry you have to go through this. If pain were a choice we all wouldn't suffer as much as we do. But it's not a choice. Sometimes when parents are scared they claim to know everything. If your mum does know people with endo she would know that there is no cure and it's not something that anybody can just "get over." I really wish it were that simple!

Ok so they've highlighted what could be causing you pain, have they given you a plan to help your symptoms? So you're constipated (which can be very painful) have they given you any tablets to take to help or advised you to follow a special diet? I take Fibre Fruits when I get badly constipated (I buy them from Tescos). Or you can try drinking prune juice.

My GP didn't believe my pain for 14 years so I know how frustrating it is when your struggling and people just tell you to get on with it.

Xxx

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Sorry but no gynae should ever, ever tell anybody else that their pain is in their head.

If it lasts past the recovery time then it deserves further investigation for other pathological causes eg adeno, fibromyalgia if nothing is found then there is the possibility of neuropathic pain which is is when the central nervous system is misfiring essentially and sending pain signals when there is no actual underlying cause. I have developed this type of pain since my surgery and been prescribed pregabalin for it. But usually it only comes on after very prolonged chronic pain cases. Your brain may be the cause of this pain but the pain itself is very real.

Also use of opiate painkillers can cause similar effects and ironically intensify pain in some people.

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Yes I agree but I do trust my gyne. They’ve said I’m not allowed pain killers as need to get everything out my system and don’t want me to take any opiates because they said I’ll become addicted and that’s worse.

I have no idea what to do, I’m so scared

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Despite their bedside manner they're right about the opiates and they can also make pain worse as I mentioned.

Don't be scared though, it is still early days and it's normal to be sore after surgery for a good while . But then if after months you are still suffering they should investigate or else if convinced they have rule out all other pathologies like adeno (endo in the womb lining, diagnosed by biopsy) then they should send you to a pain clinic which handles pain holistically with psychology and physio as well as non opiate medication like gabapentin or pregabalin.

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Hey sorry to hear about your pains. Endo is odd you could say since a stage 4 can get no pain at all and someone with stage 1 can get awful pain. I get constipated a lot I have made some changes lately they might help you too. Eat as much fruit as you can a generous sized bowel of fruit a day is an instant boost of fibre along with lots of water. I also have activa everyday to help digeston and high fibre cereal bars and cereal however dont eat them all at one you might get stomach ache so slowly introduce them over a handful of days and then it take a few days to get working but it be worth it! For pain relief without meds try heatpads, tiger balm alough not near incition cites i use it for my leg pain. Not sure if i have endo git to wait abd see in March. Try not to stress because it can cause havok on the body recovering so distract youself as much as you can. Im in uni also and know its stressful apply for special circunstances i think its called if you have any work due in soon. Good luck for rest of recovery sorry i cant give much advice on post lap because I haven't experienced one yet. Rest well and stay hydrated😊

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