All symptoms of endo, but no endo - Endometriosis UK

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All symptoms of endo, but no endo

Laura15 profile image
12 Replies

I have had all the symptoms of endo for the last 3-4 years which have gotten a lot worse over the last two years.

I had laproscopy and they found no signs of endo. Has this happened to anyone else? What did you do? I feel like no takes this seriously and starting from scratch again.

looking for any help and advice please

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Laura15 profile image
Laura15
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12 Replies
CryBaby91 profile image
CryBaby91

Hi :)

Was your surgery done by a basic gynae?

Laura15 profile image
Laura15 in reply to CryBaby91

no I was referred to an endo specialist and they did the surgery.

I’ve started doing research into chrones as I didn’t realise that the symptoms of painful sec and periods can also be caused by chrones as well as all the bowel issues. So wondered if anyone might have had any similar experiences

Lindle profile image
Lindle in reply to Laura15

Did you have a scan first?

CryBaby91 profile image
CryBaby91 in reply to Laura15

Okie dokie, if it was a specialist then that seems more likely to be correct but obviously I'm not a doctor. Did you do any other tests to rule things like chrons out? You would need to have some autoimmune blood tests done and likely some scans specific to autoimmune diseases. Which ironically can have similar (some identical) symptoms. My doctors thought I had lupus for 10 years! Defo speak to your GP and see if there's some other roads you can go down, pain is not normal and you should never be left to suffer. If endo isn't the answer you deserve to know what is xxx

Laura15 profile image
Laura15 in reply to CryBaby91

thank you! 🙏 yes I’m going to start my journey again to try and pinpoint what might be causing this.

Thank you for the support and advice, much appreciated xxx

Blue_Sky12 profile image
Blue_Sky12

hi Laura, I had my lap done by a general gynae with no other scans for endo although GP did a really thorough amount of tests and scans in response to symptoms and pain in different areas. Op was just before Christmas last year and I was devastated not to have answers for my pain and other symptoms. I went back to my GP who initially offered to refer me to the pain clinic, but when I gently pushed the conversation and asked if he had any idea why my symptoms could be so consistently varied throughout my cycle if there was nothing gynaecological going on, he agreed that was an excellent question! He also knew that endo can be a real challenge to diagnose and offered to refer me to a different hospital for a second opinion. He did a bunch more tests first including new rounds of x rays and upper and lower endoscopies as well as repeating all the bloods. I’m still on the waiting list (apparently another year to go!) for the hospital, but this one has a specialist endo centre attached so I’m hoping even the general gynae will have a better idea about it.

So although I don’t have answers yet, it was so validating to be listened to in that way by the GP and I do have some renewed hope of getting some progress at some point!

Laura15 profile image
Laura15 in reply to Blue_Sky12

I’m so sorry that you have had to go through all of this! It’s so awful and draining.

I really hope you get some answers soon! 🙏 x

Faithstar profile image
Faithstar

Hi this has happened to me , after I had my first laparoscopy I was told I had no endo . My consultant at the time said I just had some adhesions and nothing else , sex was so painful me and he referred me for psycho sexual councling . I can’t even begin to tell you how it made me feel . I actually thought I was going mad. Pain continued for 5 years , I was put on merina tried all kinds of pain relief and I finally got second laparoscopy and was told it had spread and was diagnosed with serve endo . You have to keep pushing and it also depended on the consultant. It’s such an unfair process just getting a diagnosis and it leaves you feeling so mixed up . I would get your Gp to refer you to a specialist endo centre and not just your local hospital . Best of luck hope it goes well for you x

Laura15 profile image
Laura15 in reply to Faithstar

oh wow! I can’t believe they told you there was no endo the first time!

How did you manage to get a second laparoscopy done? Did you have to go back to your gp?

I was referred to an endo clinic and the surgery was done through an endo specialist.

I am going to go back to my gp and keep pushing because until I get a diagnosis my symptoms won’t go away.

Thank you for sharing your story and I’m so sorry this has happened to you. 🙏 x

eunha profile image
eunha

Hi, Im so sorry you're going through this ❤️‍🩹 Its so devastating to feel like you are starting from scratch. I had the same thing happen to me. I had my first lap done 2 months ago. My sis and I sought out an endo specialist after doing so much research on endo. I had my lap first, came back as no endo but some weird inflammation on my diaphragm. I was devastated when I got the result, I wanted an answer for all my pain. I tried so hard to hold back my tears but couldn't. Everything looked normal and the two small spots cut out came back negative. My sis, 2 years older than me--we both had endo symptoms but slightly different-- had her lap done the following month, came back positive for endo. The doc said it would likely have been missed by many other docs but there were some signs she recognized and so she cut it out liberally and the tests confirmed she was right to do so. I watched video of both surgeries, it made me understand a bit more why endo is so hard for many docs to recognize and why so many women are having experiences like ours, it just looked kinda like healthy normal tissue for my sis, but acted weird when she started cutting and tested as endo. It makes us think I have endo too but its too hard for even a specialist to see. idk. is it there and will be more visible some years from now?

However I did get a hysterectomy based on my symptoms, not on any abnormal tests, and I feel better from that. My sisters doc reassured her before the surgery that even if the tests came back negative, clearly something was wrong from the pain she felt on her exam, even tho no tests showed anything. So even tho my uterus looked normal I feel a lot less pain with it out. My sisters and my unusual butt pain when sitting is significantly improved after hysterectomy, don't know why, but it is.

I do have some other health issues I now guess are different from endo that I am looking into.

Sorry love, big hugs

Laura15 profile image
Laura15 in reply to eunha

oh I’m so sorry that you have gone through all of that. I did the same when they told they hadn’t found any endo. I nearly cried! Not because I wanted it but because it left me in the dark with no answers, they didn’t even tell me if they did biopsy on anything.

So now I’m recovering from the surgery but still with symptoms.

I’m glad that your symptoms have eased with the hysterectomy. There’s too many people going through such difficult times with this.

I hope your other symptoms get better too.

🙏 xx

eunha profile image
eunha

So sorry they left you in the dark ❤️‍🩹 Seems like most doctors don't understand how important it is for us to understand what was done and whatever they can tell us about whats going on with our bodies. They don't understand the emotional stress we've been under. I'm sorry, and I hope you get some answers and relief 💕

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