Feelings

[Rachaellouiset]

Hi everyone, this is my first post here. But I just need to talk to someone who can relate to me about these things. I haven't been diagnosed with endo yet but I'm due an operation on the 11th of March. I'm coping with the endo symptoms okay, it's the mental toll it's taking on me that I'm struggling with. I have a partner and I can't have sex as the pain is too much. Sometimes we can do it. Most of them time we can't and it's making me feel less of a women, I don't want my partner to leave me. Is there anything anyone can suggest to help ease my mind 😔

[GSUndiagnosed]

Hi Rachael, Sorry ti hesr about your problems. I’m also a potential endo sufferer, i’m ongoing test atm for diagnosis. It is such a horrible, overwhelming feeling to not know what’s wrong with you, i know how you feel x

do you mind telling me what your endo symptoms are and how long you’ve been trying to get a diagnosis etc? x

[Rachaellouiset in reply to GSUndiagnosed]

Exactly. I think it's the fear of the unknown that's making me sad too. Symptoms are, excruciating pain on period and during ovulation. Pain when weeing and pooing this happens at any time of my cycle. Bloating, naseua, stabbing pains in my bum (tmi Sorry). I honestly can't wait for surgery day! How are you getting on with the tests? X

[Rachaellouiset in reply to GSUndiagnosed]

Also, I've been having these problems since around April last year so I'm very fortunate to have gotten in so quickly to have the surgery x

[GSUndiagnosed in reply to Rachaellouiset]

Hi Rachael, we’re very similar - my symptoms are the same apart from i don’t have bloating. I also have spotting blood after sex and sometimes when i have a bowel movement too (TMI as well lol sorry!) My symptoms also started early last year too. How old are you if you don’t mind me asking? Are your periods regular? x

[Rachaellouiset in reply to GSUndiagnosed]

Yes, I was bleeding occasionally after sex too. The bloating makes me look pregnant! I came off the Depo injection and it all started. I'm 21, will be 22 in July. Kind of. I have 1 month. Sometimes 2. Sometimes I can go 5 weeks then I'll bleed. Its so weird xx

[GSUndiagnosed in reply to Rachaellouiset]

Sorry I forgot to answer your question earlier about my tests. I'm currently waiting for an MRI test to see if anything shows up.. I've had two ultrasounds and they were clear.. Plus a private smear test to make sure that was ok (was fine). Also had a stool test to check for inflammation in the body (that was an embarrassing experience handing that over in the doctors surgery lol) and that also came back fine. Hoping to get some answers after the MRI.. I'm 24 so similar age I hope your lap goes well and you get the answers that you are looking for - please let us know how you get on. Also about your partner.. If he cares for you he will support you through this - talking as much as possible about the problems do help x

[Rachaellouiset in reply to GSUndiagnosed]

I really hope it goes okay for you. At least you've managed to get pretty much everything checked first so your last option will be the lap. I will for sure, I don't know what results I'm hoping for to be honest. Yes he does very much so, he's very kind and caring and understands and respects the issues I'm having. But I'm just terrified of losing him over it. I have a little girl already whose 3. But we want another which is how I ended up in the position I'm in now. Thank you, big love and hugs to you 💕

[GSUndiagnosed in reply to Rachaellouiset]

You too hun, i’m always here to talk if you need x

[Hidden]

Hey Rachael, I am new on here too but just want you to know you're not alone, I'm struggling with the emotional toll of the pain and worry as well. Being undiagnosed is hell, at least once you know what's wrong then the treatment can be more specific. I can't offer advice as I'm fairly clueless but you are not alone. Be strong and don't blame yourself. You are still yourself, I am sure a wonderful and beautiful person. I know it's hard but stay strong, you'll make it out the other end soon enough xx

[Rachaellouiset in reply to Hidden]

Hi Jaycee, thank you for your reply its very heartwarming! It's a horrible thing to carry with you mentally, I'm hoping the surgery will provide some form of answers, only 4 days to go! I really hope your okay, and I believe we can all get through this if we continue to be open with everyone around us and as an online group. Are you awaiting any appoinments? X

[Hidden in reply to Rachaellouiset]

Hey,

I've just got home from an ultrasound scan, gotta book a doctor's appointment soon.

Being open is so important, hiding everything away is so bad and I've definitely felt better since coming online here and talking to you lot and my family. It makes it less scary, and more manageable! X

[Rachaellouiset in reply to Hidden]

Hi Jaycee did you get any answers from the ultrasound? It sure does. I've just been reading some old posts on here and everyones posts are all so relatable! Ive been trying to find out more about pain when urinating when having endo as I get excruciating pain x

[Hidden in reply to Rachaellouiset]

Hiya lovely,

They found that one of my ovaries is attached to my womb (strangely not on the side I get most of the pain, unless the nurse meant the one on her right not my right!), And having read some more posts in here that is often caused by endo. So I have an answer but no progress has been made yet in terms of what to do.

That does seem to be quite common with endo, but I've never had it. I get agonising pain when I'm full (of wee or other) but never when actually going to the toilet. I guess everyone is slightly different, only specialists will be able to give definitive answers! X

[Rachaellouiset in reply to Hidden]

Hey, ah well at least you've got an answer in some way. Usually it's because of endo yes, I get that pain too.

I've read it's quite common too. from Sunday just gone to Thursday I've been in the worst pain xx

[Hidden in reply to Rachaellouiset]

yes it's better than I had before. But the soonest follow up GP appointment I could get was three weeks away, so it's a slow process.

Have found anything that helps at all? Hot water bottle, painkillers, moving, curling up etc? Xx

[Rachaellouiset in reply to Hidden]

Oh bless you hun! It always feels like. Forever doesn't it. I had my lap done yesterday. She found stage 1 endo on my cervix and bowel and I had swollen ovaries. Which she now thinks there's a possibility I could Have pcos with the way they looked when she saw them. So that's a new kettle of fish to tackle. But she got rid of the endo she found so fingers crossed no more pain during bowel or bladder releasing. And with it being on the cervix. I'm praying the painful intercourse will stop now too. Xx

[Hidden in reply to Rachaellouiset]

It does

Was the lap to have a look or was it to remove what's there? (pcos?) Well that's good, I hope it makes life easier for you! xx

[Rachaellouiset in reply to Hidden]

Fingers crossed it will! It was to have a look. She ablased the endo and found swollen ovaries. Pcos is polycystic ovaries. Don't take the word cyst to literally in that as you don't always have cysts xx

[Hidden in reply to Rachaellouiset]

I'm glad she found something she could fix, it must be a relief for you! I hope you're feeling okay today xx

[Rachaellouiset in reply to Hidden]

It is, easier to know what your dealing with. Thank you. I'm just sore tender and bruised! I hope your well xx