5 days post diagnostic laparoscopy newly diagnosed with endo

[Dawn84]

Hi I had a diagnostic laparoscopy 5 days ago and am feeling quite low and exhausted. I have had 18 months of chronic pelvic pain, fatigue, bloating, constipation, hip/leg/bottom pain and pain during/after intercourse. In hindsight my symptoms have been for a lot longer but probably masked by contraceptives. I had my laparoscopy and all went went. On recovery my consultant came to speak to me when I was half asleep!! So didn't take it in properly but he told me I have a small amount of endometriosis on my bladder and both sides of my pelvic area. He said he's not certain my symptoms are caused by this?! I have to.go back and see him 3-4 weeks to discuss options. Possible zoladex injections or surgery. Although I'm relieved to have a diagnosis I'm feeling quite down and confused! Can anyone tell me out their experiences and thoughts on treatment. Thank you so much in advance 😊 Just feeling so alone at the moment. ....

[Nickimidge]

Hey dawn your not alone! I had my diagnostic lap last thursday, i too am feeling quite low and down, and can be extremeley emotional at times. Always here if you want to chat. No endo was found for me, but other adeshions were found and it appears that both my tubes are blocked following a dye test they also did, i only know this from whats on my discharge notes, and i’ve yet to speak to anybody as i never saw my consultant before i was discharged, i’ve got to wait 6-8 weeks before i’m seen again. Try to keep smiking xxx

[Dawn84 in reply to Nickimidge]

Thanks for the reply. My lap was also thurs I got my days muddled lol! I guess it's a mixture of still recovering from surgery and coming to terms/making sense of what was found. I tricky because I feel talying to you after an anaesthetic isn't the best as you are quite drowsy but that's a long time to wait for you to discuss. I good to hear I'm not alone! It can feel quite isolating! Some of my family/friends have been great and supportive others not so much! More due to not understanding. I hope your recovery is going ok. I went back to work Monday but thankful don't work today or yesterday. Feeling super tired! Xx

[Nickimidge in reply to Dawn84]

I can’t believe you’ve gone back to work, i’m definatly nowhere near ready for going back to work!! Good on ya though girl. My family have been amazing, the person who has suprised me the most is my SIL we don’t always get in, but she’s been absoloutly amazing, my friends have been not so supportive but i agree with you its because they don’t understand, they are the best friends a girl could ask for, but i just don’t think they know what to do or say, so they’ve gone all quiet on me!xxx

[Dawn84 in reply to Nickimidge]

I suprisingly felt ok on Monday! But felt exhausted that evening and since so maybe went back too soon. I'm back again tomorrow and Friday so fingers crossed will be ok. I guess everyone's different in their recovery so take aa long as you need. I feel the emotional side is worse than physical at the moment! It's so comforting to talk to someone going through this so thank you. I'm glad you have some support. My partner isn't great with emotional stuff! My mother in law was wonderful after my recovery. Hope you continue to recover well. Xx

[Nickimidge in reply to Dawn84]

I wasn’t given a sicknote so i’ve had to self cert for this week, i’m at the doctors tomorrow and i’m asking for a sicknote, i thought i felt ok yesterday so did a bit of light cleaning and it was the worse thing i could have done, my incision sites hurt and i was absoloutly knackered, i’m stood on my feet all day at work so i definatly don’t think i’m ready to go back. I’ve found alot of support from a few women on here and if i wasn’t for them somedays i would feel very alone, so always feel free to private message me! My partners very like yours can’t cope with the emotional side of it, one of my work colleagues brought some flowers round the other day and i just burst into tears, he just walked out of the room because he doesn’t know what to do with me when i’m like that, but he is supportive, but it took him a while to understand things!!xx

[Dawn84 in reply to Nickimidge]

I definitely sounds like you need longer. My op sites are healing well and an feeling comfortable just so tired. I'm on my feet all day too I'm a vet nurse. My work have been supportive so will just have to take it somewhat easy!! My partner is supportive but isn't in touch with his emotions where as I'm a very emotional person!! Since having my operation my dad hasn't contacted me once to see how I am so feel disappointed in that! I guess in times like this you see who's really there for you. Xx

[Nickimidge in reply to Dawn84]

I suppose everybody heels differently don’t they! Luckily my workplace are really supportive aswell. I’m sorry to hear your dads not been in touch, maybe he just doesn’t know what to say to you. I’m a very emotional person too, i can cry at an advert on the tv!! 😂 xxx

[Dawn84 in reply to Nickimidge]

Me too!! Your probably right. He doesn't show his feelings very well. You are right everyone does heal at different speeds it's a personal thing. I hope you feel better soon. I'm pottering around the house during chores today in between stopping for a rest and a cuppa!! Xx

[Nickimidge in reply to Dawn84]

You do right, make sure your having some nice biscuits too!!! Just recieved my follow up appointment through the post, 15th December thats 11 weeks away! I can’t wait until then for some proper answers!!!x

[Dawn84 in reply to Nickimidge]

Chocolate is my friend at the moment lol! Gosh that's a very time I wouldn't be happy with that. I would ring them and say you haven't been given amy info after your surgery and yoy need answers of what was found. Even if the Consultant can ring you. Xx

[Nickimidge in reply to Dawn84]

I’m seeing my GP tomorrow so i’ll see what he can tell me and then ring up! I’m absoloutly outraged and upset! Xxx

[Dawn84 in reply to Nickimidge]

I would be too. 6 weeks would of been long enough. I hope your gp can give you some answers. Sending hugs xx

[Nickimidge in reply to Dawn84]

Thanks hun. I could have coped with 6 weeks but not 11! Xx

[Jenjen87]

Hey lovely,

You sound just like me, so I get it’s been tough, you are not alone 😘. I’m glad you’ve finally got an answer though. It’s exhausting. I put a post up on positive laparoscopy and surgery I had at the same time and I felt great 3 days after, now I’m back feeling exhausted and some bowel bleeding but Still recovering well. The abnormalities I’m trying to discuss with my nurse.

I too come out of lap thinking I made his diagnosis up so had to call the nurse 😂. He told me he wasn’t going to remove it if he found it and then he did. So thought I’d made that up just to make myself have a diagnosis 😂. I didn’t make it up so it’s good to check 😊.

Just feel and be lovely, you’ve been through an emotional rollercoaster for a very long time now and you’ve got a diagnosis. Which will be relief but now your also recovering from the lap, which is also tiring. Then you’ve also got to think about everything going on around you, next steps, people, work and so forth. It doesn’t stop.

You may have down days but try and embrace them and flip a negative into a positive. It isn’t easy but our mind is our biggest enemy and if we can train that then we can get through anything.

And you can 😘.

It’s a very lonely place to be in too because no one understands, stick with us chick, we will be here for you anytime. Find yourself a couple of close network people that care. I’ve had three people out of everyone who has stuck by me through the very low times, high times and middle times but they’ve been there. And this group too.

I agreed to have the Mirena coil put in, I was very dead set about having any hormones because I go a little bit doolaly😂 but they explained to me that the hormones are only released into the area it is placed in so does not travel around your body, in turn having less hormonal affects. It is also a lower dosage than the pill.

I agreed to this because it seemed like the best option and the nurse said it’s amazing if I can work with random bleeding etc for a few months.

At first I was like nah but thought it cannot be much worse than what I’ve been through already so may as well give it a go. The mirena coil should stop endo growth. I believe and I’ve had quite a few woman tell me how great it has been for them.

Just take your time with the choice, there are a number of options.

I think on one of my post I have a list of symptoms too, which you can look at and see if it’s similar. Only to see if they are similar. If not I can message them. I had a lot, my doc also said the same that some don’t interlink with endo but it could be the body fighting infections or illnesses I’ve had. But we’re looking into it😊.

Dream big as well beaut, I am a very real person but also don’t like reality, it’s miserable 😂. So I make big dreams in my fairy and unicorn world 😂 to help get me through this. It doesn’t matter if I get them but the dreams make me smile! And we need this right now. I wanted to have emigrated to Aus by now but this took a turn for the worse but I know that I’m getting there and I just plan different things daily. Take my mind away from other stuff I go over in my head.

Your doing really well Hun. Stay strong and accept the down days, your allowed.

Message me anytime with questions, I’m 11 days in so know what your doing through right now❤️.

Here for you.xxxxxxxxxxx

[Dawn84 in reply to Jenjen87]

Hey thank you for such a lovely message. Its nice to hear you've been through similar and your doing amazing by the sounds of it. The physical recovery is going well it's more the emotional side and the exhaustion. I too felt quite good having good days but then I come crashing back down. I already had a merenia coil fitted 2 years ago. But my symptoms were still bad although my periods pretty much stopped which was great! 😊 I also took the pill alongside the coil bur this make no difference. Unfortunately my mum died of breast cancer when I was 5 she was very young. So I'm unable to take the pill for long periods as I'm at risk of getting it too. I will wait to see what the Consultant says. Did you find you were extremely bloated after surgery? I look 6 months pregnant 😥 thanks again for your reassurance. We are stronger than we think! 😊 xx

[Jenjen87 in reply to Dawn84]

Thank you lovely. The emotional side is what I struggle with too Hun, weirdly that’s the hardest part, I asked the nurse today if it was normal to still feel so tired she said yes as we could only take out what we could see. But she said the coil will help. We all live in hope 😊! For us both fingers crossed this gets better 😊🤞🏼.

See I still seem to be having symptoms😂 but she did say again they can give me something else alongside the coil, like you by the sounds of it😘.

I am so sorry to hear about your mum, that’s hard and always will be, your strong to be able to talk about it. Sending you love and hugs.

Fingers crossed the consultant can find something else more viable for you🤞🏼. Keep me posted beaut.xx

I was Hun, it does go down, the wind didn’t come out the way I thought 😂 but it does go down, it is uncomfortable and frustrating but it can take a little while.

I didn’t use anything but you can get some things to help with that over the counter. Are you finding it’s painful?

We are Defo stronger than we think, I say I’m not wonderwoman but I like to think I am😂.

Lovely chatting to you 😊.xxxx

[Dawn84 in reply to Jenjen87]

I really hope the coil helps you. Maybe the pill alongside it will help further. I will just wait and see what the Consultant says. I'm not sure I like the sound of zoladex as it puts you in a temporary menopause and it has lots of side effects. He did mention having further surgery.

The bloating is uncomfortable but not painful. Fingers crossed it improves but I suffered with bloating badly before the op.

Lovely chatting to you too 😊 xxx

[Jenjen87 in reply to Dawn84]

Fingers crossed to you too beaut. Keep me posted please. I’ll be thinking of you.xxx

[Bambaloo]

Hi ladies, I’ve recently been diagnosed and will not be seeing the consultant until mid Nov. In the meantime I’ve started the endo diet and taking a few alternative measures including seeing a herbalist and acupuncturist. Baby steps.... if I’m still struggling and have a flare I’ll try Zoladex as suggested by the consultant.... followed by the pill. Also... I might have endo in my lungs so a bit more nervous about how it travels around my body...

Happy healing and eat well... it’s alrrady made a massive impact on my bloating.

Ciao for now x

[Dawn84 in reply to Bambaloo]

Hi Bambaloo how are you doing with your recovery? Where is your endometriosis if you don't mind me asking? Where can I find our about the endo diet? I'm willing to try anything! Not keen on hormones as have been on various hormones since I was 15! Acupuncture sounds good I already have this for upper back pain.

How do you know if you have endo on your lungs?

Glad to hear the endo diet is helping your bloating. That is one of my main issues along with the pain. Xx