Endometriosis UK
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Really need a friend right now

I'm really struggling just now.

This awful disease can make me feel so lonely as none of my friends understand what I'm going through.

I had a lap on June 30th this year under a general gynae and no endo was found and I've now been referred to an endometriosis specialist in Edinburgh BSGE Endo Centre.

I really need some comfort from anyone who's been through something similar of a negative lap and then later finding and being diagnosed with endo.

For 7 years I've had every endo symptom in the book and I'm really struggling with the thought of having to wait months to see a specialist and then further months for another laparoscopy.

I'm 20 years old and engaged and I feel like I am living in the body of an 80 year old who can't walk very far, can't have sex and is constantly tired and in pain.

I want to be planning our wedding and starting our family but I'm constantly sick and sore and I just need some answers.

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Hello @staceymacg, so sorry to hear you are having a tough time. It really gets you down when you don't know what is causing so much pain and discomfort but hang in there. Trust your body and don't give up. It could be worth checking out adenomyosis which is very similar to Endo but harder to find. It is great that you are being referred to a specialist in Edinburgh and am sure that they will be able to give you some more answers. Just know you are not alone and keep chatting to people and get the support you need.

Get back to your GP and get some good pain killers too.

Sending a big hug to you x

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It's the pain that's getting me down and I'm on morphine for relief and it's still not working :(

I hope I'm not waiting long to see the specialist! Xx

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Hello Staceymacg, I'm so sorry to hear that you are struggling at the moment. I know how you feel, Endo is such a horrible disease to have to learn to live with - the diagnosis and treatment is all so hit and miss and you seem to spend half your life waiting for tests and referrals. But I recently attended a talk given by Prof. Andrew Horne (one of the Endo specialists up in Edinburgh) on cutting edge Endo research, diagnosis methods, and treatments. Hold on for a little longer and hopefully there will be a little light at the end of the tunnel soon, x X x

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He is one of the specialists I have requested to see! Thankyou xxx

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It's so hard to be taken seriously and to get a proper diagnosis. Keep strong and be kind to yourself. Chat on here when you need support. My niece is going through the same problem, the hospital said they had found nothing in her op but the next week she was heading back to the hospital in an ambulance with the pain. I'm convinced she has endo the same as me. Sounds like you are being referred to the best place. I hope the referral goes well. x

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It's so disheartening when you fight so hard to even get the op and then nothing comes back. I was truly distraught when I woke up and was told "everything appears normal"! I hope I get some answers at the specialist soon cxx

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I had my lap on Thursday and they found nothing, so I'm in the exact same boat. The only difference is they are simply giving up on that trail now and are sending me to different referrals. It's isolating at the best of times but when you feel even further from an answer it can feel even more so.

Stay strong, there will be answers.

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Oh goodness. What route are they going down now? I really felt no comfort from the gynae surgeon telling me it was all normal because 7 years of symptoms isn't normal and I'm so happy to be finally be on the road to see a specialist?

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Well I'm hideously constipated and have been for a couple of months now because I've been taking codeine and tramadol since October, so this was what the surgeon picked up on and I seem to always have a UTI however nothing ever comes up in my urine! So I'm looking at the possibility of Interstitial Cystitis and having to go to gastro as well. I've been mentioning the possibility of Adyno/Adeno (I'm so bad at spelling) but it's being ignored. If you need a friend then you can always come to me! I'm in need of someone who can relate to everything too!

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Jeez that's awful. Was it a general gynae who did your lap? I know my general gynae only checked my pelvis ie my womb and ovaries but my GP suspects I have endo in my POD as that causes both gynae and bowel symptoms which I have! I'm hoping I see a specialist soon and and they will do much more in depth exploration xx

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I think he was a general gynae. I have pain from my hips up to my diaphragm and my bowels have been a nightmare. So I've had all the tests for celiac and inflammatory levels etc, everything came back normal. When I explained 'of course my bowel was full I've been taking codeine four times a day' he didn't seem to have much of a reaction.

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Have you looked to see if there's any BSGE endo centres near you? It might be worth getting an opinion from an endo specialist! Xx

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I'm in the arse end of Cornwall, we do have an Endo clinic down here. But I don't know! I will definitely have a look. Endo in my family history and from the people I've spoken to that have it the pain I have is so similar it seems so odd the shouldn't find anything.

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I would definitely look into it. The way I'm looking at it is I have no comfort from the gynae telling me everything is normal because they can't always see endo. When I see the specialist and they do the laparoscopy again, if they say it's nothing I will be a lot more comforted and can start looking into other possible outcomes. But, I really do feel it is endo I mean for 7 years j have struggled with every single endo symptom xx

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Exactly! When it correlates so dramatically and for such a length of time. I was almost looking forward to coming out of surgery and knowing what was wrong with me! Having a diagnosis!

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I was the same!! I burst into tears when they said all was clear and the poor nurse had to deal with my breakdown and she couldn't understand why I was so upset that it was technically "good news"... I would try and see a specialist, be prepared for a fight with your GP to get there though!! Xx

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Well, I saw a specialist at the clinic but I'm not sure about the surgeon. It was such a blur of a day. I managed to stifle my tears but I don't think I hid the disappointment off of my face.

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You're stronger than me then!! I was crying the whole day and I was just horrible disappointed! I still feel like the procedure was for nothing as I'll have to go through it again but under a specialist. If only we got taken more seriously and could see a specialist first rather than being doubted every step of the way and having to go through general gynae first!! Xx

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I have the same feeling like it was for nothing. There is the possibility of seeing it through MRI's now isn't there? I don't understand why that isn't used more? Instead of having weeks of recovering from surgery

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I think it only works in some cases and with very detailed MRI's so that's probably why🙄!! Xxx

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Shock horror! It's used for adeno and fibroids though I'm sure. My partners mum had a hysterectomy because of fibroids, and she had very similar pain to me. I just know the main pain isn't gastro, it's too localised!

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I'm the same!! My pain is definitely gynae!! Xx

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I'm really surprised your gynae didn't check your POD as it's such a common place to have endometriosis particularly if you present bowel symptoms with it. Thats terrible of the gynae.Its one of the places that causes the most troublesome symptoms even with a small amount. My endo was found in the POD and implants removed I had gynae and bowel issues- my consultant prior thought my pain was bowel in origin and was surprised when he found endometriosis. I do feel for you endo is a nasty condition to have particularly as it is so difficult to diagnose and can mimic many other conditions.

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He only checked womb & ovaries & tubes, that's why I can't wait to see the specialist who will check everywhere!! Xx

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I hope that they can push the referral through quickly particularly as you're suffering so much pain. I would keep hammering at the hospital- really tell them how much this is impacting your life. With the NHS you have to speak up to get anywhere...

I have had some recent flare ups of pain which concerns me ( not as bad as prior laparoscopy) my follow up appointment cannot come quick enough! ( I'm due to see fertility consultant 27tn July). xoxo

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Yeah I'm going to go back to my GP tomorrow and see if he has any idea or if I can call the hospital and see if there will be any cancellations I can squeeze in!

Good luck at your app! Not good you've been having pain again :( xxx

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And don't say I'm stronger than you, because I doubt that's true.

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Hi,

I have been experiencing symptoms for the past few years as well. I am 21 yrs old (and engaged too, grats to you :) ) and will be going in for my first lap for endo diagnosis August 3rd as it runs in my family. I am afraid they won't find anything even though I have been in a lot of pain and have cysts on both ovaries. I too am constantly tired and sex can be difficult. Been to the hospital a few times for the pain and they just tell me either a cyst ruptured or I have IBS... smh. Hopefully we can get some answers soon.

Just know you aren't alone in the journey, keep me updated on how things go for you. x

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Thankyou so much. I hope you get some answers, I wouldn't wish this outcome on anyone!!

I hope the specialist can find it and I get some answers! Xx

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Hear this far too often.

I have had many related symptoms since my late teens.

1999 i had energancy open surgery for ectopic pregnancy

Remaining tube was investigated by a Lap and completely fused together

A few years on, still in so much pain, i went back to gp. It turned into endless visits, always leaving with yet another prescription of codiene and 'its IBS and most probably 'just' ashesions.

Changed doc surgery. Tried again and they reffered me onto my local gynae.

Had a diagnostic laparoscopy in 2005 with a general gynae. No endo found, just adhesions that were fusing bowel to uterus. Diacharged. Pain continued. I ended up in anti depressants due to me believeing i had actually been mad all theae years. Family kept telling me to 'forget about it' (how on earth you can just 'forget' excruciating pain is beyond me) i figured if ive had investigation, and nothing found, i must just be crazy. Crazy & infertile it seemed.

In the following years i kind of just got on with it, dispite the pain every month, major bowel issues which left me running to the loo, nasty lower back pain daily, stabbing pain, painful intercourse blar blar... it became my normal.

In 2012 i was lucky enough to be able to have IVF and i fell pregnant with my beautiful miracle daughter who is now 4 💜

This takes us up to now. I am a few weeks away from 40. Still suffer imensely. Found out i was covered with my partners work healthcare. I have always kept up to date with endo news as i've known from early on I've had it all these years. It came to light that general gynae surgeons will often miss endo in all it's forms and a lot of women are having pointless Laps with the wrong surgeons.

I did research and found a bsge surgeon not too far away. I was booked in for an mri. From the mri, I was told i have rectovaginal endo in nodule form in pouch of douglas. Also a chocolate cyst within one of my overies. You can imagine how releaved i was. Releaved aounds like i actually wanted endo, but in relaity, it was a relief as i had been dismissed for over 20 years!!! All in all 3 weeks from 1st consultation!! I'm NOT crazy!!! I am finally due to have surgery with the right surgeon/s.

If gp's knew a little more about it, maybe all this pointless surgery that finds nothing, would stop.

If they'd of sent me (and you, and so many other women) to the right place in the 1st place, we would not of felt like absolute idiots all these years.

Its just a complete waste of time.

For the patient to the NHS.

Don't give up hun. I was lucky to be able to go private. Luckily you should be in the right path to diagnosis now you are heading to a bsge centre.

Good luck x x

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I'm so glad to hear you have got your diagnosis!! I really can sympathise as I was starting to feel like it was all in my head as that's what everyone was telling me!!

I'm really happy to hopefully be on the right path now as I think that surgery was absolutely pointless.

Fingers crossed xxx

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