New to endo and alone post lap surgery.... 😓

[Danijordi88]

Hi Everyone, quick background. 2 kids - 13 and 4 started with endo symptoms pre-pregnancy with baby number 2. GP messed around with my pills and I got caught out with baby number 2. Pregnancy and birth fine. Symptoms came back worsening to where we are now.

Had my lap surgery 28th April - diagnosis severe stage 4 endo removed, 6cm Endometrioma Cyst removed from right ovary and adhesiolysis (ovary fused to my bladder and bowel - god knows how that works) apparently they couldn’t even get to the cyst because the adhesions were that bad. Uterine and bowel involvement. Discharged with marina coil 6 months start the process for further surgery.

Basically, I am really struggling with my recovery. I feel like I am not getting any better! I am still sore and hobbling about the bulk of the work done on me in to my right side where I believe the cyst and adhesions were worst, I also vaguely remember my obgyn telling me they packed it but I was so out of it I don’t remember. I am still so swollen and to to make matters worse the doctor has refused to sign my fit to fly documents today for my best friends wedding. She flew out there today, I am meant to go Tuesday. I don’t want to do if the doctor says I am not fit but it’s just another massive blow given I am a bridesmaid.

I feel like my tummy should be feel a little less swollen and that I shouldn’t still be saying ouch at every move. I know I have had surgery and pretty major by the sounds of it but I just don’t feel like my insides are healing? Should it take this long? I have no infections or blood/water in the surgery sites from getting checked today. I am just so frustrated that I feel like I am getting no where! It’s all made worse given that they weren’t expecting me to require this much work in theatre. The surgeon even joked before I went down saying if you don’t have that much endo then we won’t bother with the coil.

Any advise on the healing process or similar situations to me would really help me right now to understand what my body is going through xxx

Ps. Pictures below are the post surgery. My tummy is generally flat with a little mum tum to the bottom so these are swelling pics day 21 looks more swollen that day 10 which is why I went to get checked out today

[Hidden]

Hiya,

I also have severe stage 4 endo and my first lap. was getting all 13 years build up of it out alongside having an ovarian cystectomy (original plan, the endo was the surprise) which also involves removing part of my left ovary because of the endo damage. Your procedure sounds great more invasive than mine was. I was useless for 2 weeks after the op and didn’t start to feel normal again until about 6 weeks later.

It is a very frustrating condition and I’m sorry it’s impacting on such things like your friends wedding. That must make it even harder for you on an emotional level. I would say, if you’re worried, it’s always right to go back to the doctor/ consultant. Don’t ever feel like you can’t or shouldn’t. I would also say that you have to remember to be kind to yourself, rest and let your body heal. When I was diagnosed, I bought some books so that I could learn more about the condition and not only did it help me get through the frustration of not being unable to do most things immediately post-op, it helped me come to terms with the diagnosis and figure out the parts of the condition that I can control.

I hope everything works out for you x

[Peebles2sarah]

Hi! Yeah I’m surprised you are still so swollen to be honest. I’ve found the swelling has gone down for me within a week-week and a half for both of my surgeries. Does it feel like the swelling from the gas? You could try gas x. I don’t see any reason that you couldn’t fly, other than pain. Me personally, I wouldn’t miss the wedding unless you feel you have to. At 21 days you certainly are allowed to fly and resume normal activities so I’m not sure why the doctor would say this. You can also request the operative report if you would like to review what they have done. Best of luck!! I’m 2 weeks post op and dealing with a lot of pain still so I know the feeling xx

[Danijordi88 in reply to Peebles2sarah]

Hi Sarah, what is it you had done?

I know I was surprised at the swelling too! However, with me having the coil fit I am also unsure as to whether I have come on. My boobs are sore and I have all the signs but my post op bleed has changed from dark to fresh red tinted mucus!

As for the flight, Thomas cook require a declaration of fit to fly for passengers flying 3-6 weeks post op. Else I wouldn’t have bothered! I am still also needing to sit down a lot so the journey through the airports either side.

[Peebles2sarah in reply to Danijordi88]

I had my tube and ovary removed off one side and endo removed throughout! Also had a hysteroscopy and cystoscopy, and dissections removed for biopsy. The coil could definitely cause bloating! I’ve never had one but I’ve heard it can cause this, just still seems like 21 days is a long time you’ll find you’ll definitely be needing to sit down more for the next few months! I am flying on June 28th and just hoping it’s not too rough lol

[Danijordi88 in reply to Peebles2sarah]

Awwww got sound like a bloody time you have had! Maybe you are right and it’s more to do with the coil that what I had done whilst it’s bedding in. The problem with coming to terms with all this endo stuff is everyone on here seems to have much more than just endo! Mine was classified as severe stage 4 on my discharge notes - you should be fine! I have just left it very near, but with the surgeons not expecting it to be this bad they did say I would be right after 3 weeks.

It’s nice speaking to people who are going through the same thing so thank you x

[Peebles2sarah in reply to Danijordi88]

Yes for sure! I’ve got a wack load of other stuff going on unfortunately it’s hard to know what’s caused by endo or something else.. endo seems to be the route of all my problems though sadly. I hope you feel better soon xx my mom had a bad time with her iud

[Chillier]

Hi, sorry it sounds like you have loads going on. I had my lap on 28th feb and only in the last few weeks have I started to feel normal again. I have only gone back to work this week on a phased return. I was swollen for a good few weeks, I think its different with everyone. Be kind to yourself and let your body heal. I tried to do too much too soon which I think has made it harder for my body to heal. I still get really tired and I'm in bed early every night. Sometimes the flying is due to the DVT risk associated with all surgery as well as the type of operation. I hope you make it to the wedding and feel better soon x

[Danijordi88 in reply to Chillier]

Thank you for your reply! I feel like I have really under estimated the healing process from this op. Reading all these individual peoples stories it seems like it’s such a long road to recovery which I need to brace myself for really. Like you I don’t forsee myself being back in work after 6 weeks which is my current sick note. I think I have really underestimated this whole process. I think I am kind of coming to peace with the idea I won’t make it to the wedding now so I will just see what they say tomorrow. I don’t want to take the risk with prolonging the issues for the sake of a holiday I won’t be able to participate much in. It just bad timing.

I am glad to here the positive sides of things as-well and I am glad you are back to work. I feel like the phased return for me will be where I end up x

[Chillier]

I was the same. I told work I would be back in two weeks!! That didn't happen paha. You just got to take things at your pace and listen to your body. When things get too much slow down for a few days. I wish you all the best with your recovery x