first lap - nothing found. Please help.

[GraceElli]

Hi, I’m new here (or I’ve been acting like a shadow for months, reading your stories & experiences and feeling a sense of support from you all without reaching out, so firstly thank you)

I have had ongoing pelvic pain since 2021. Continuously. It started as a niggle in my right ovary. I noticed it at work firstly. When I would get up from my chair I felt a sharp pain in my ovary. I put it down to just being sat for too long.

It slowly but surely got gradually worse over time. I would noticing I had to lean into my car delicately I couldn’t drop myself on my sofa after a long day. I felt my body using the trolley at Tesco as support. I was 27. I have had two wonderful children. Now (12 & 9) why was this happening? I have never had any health problems, never been into hospital other than child births.

Finally in June 2021 I was referred for an ultrasound. They found fluid in my pelvis, cysts on my right ovary & I was told the pain I was feeling was seen on screen. I was asked to empty my bladder so they could perform an internal ultrasound, which is when they found a shadow near my right ovary. I was booked into for a CA-125 blood test (my mum had a tumour that had the potential to become cancerous; ovarian cancer, so she was given a full hysterectomy years back) my results came back fine. I was then referred to gynaecology.

I was admitted into hospital early 2022 with severe pelvic pain. This was the start of a horrendous time for me. I was taken for a CT scan which showed a corpus luteum cyst and enlarged lymph nodes. It also showed the shadow area around my right ovary. “minimal vascularity adjacent to the right ovary / part of the ovary ?significance. Prominent vessels noted in the right ovary / part of the ovary ?significance. Prominent vessels noted in the right adnexa? pelvic inflammatory disease. Free fluid was seen in the mid pelvis measuring to a depth of 38mm’ hemicolon. Several prominent lymph nodes are noted in the right mesocolon with diameters ranging from a few to 15 x 8mm. The CT results noted: CT is not appropriate for findings - refer back to gynae.

Back on women’s health ward I was treated for Pelvic inflammatory disease. They gave my vaginal swabs and my results all came back clear. I was then put on Doxycycline to treat Chlamydia - even though my results were completely negative for any infection, sexually transmitted or not. (I have been with my children’s father for 13 years!) I felt dirty, ashamed & embarrassed. Because I know me & I know my body and I knew it was all just fobbing me off with PID. I felt so sick. I refused to continue the treatment of Doxycycline I couldn’t stand, strong a sentence together. I asked the Dr why I was prescribed Doxycycline when they knew I didn’t have a STI. The answer I was given “we just need to rule everything out, we aren’t really sure what is going on right now” I was discharged with a diagnosis of: ‘likely PID’

I was offered a MRI scan a few months later (in between waiting I have been prescribed and am still taking all sorts of pain relief, Naproxen, Mefanamic acid, Dihydrocodeine, Gabapentin, Tramadol, Diclofenac, anti sickness, Omeprazole. Some blanket the pain but nothing takes it away fully.

My MRI results came back: A 5 mm simple likely synovial cyst on the left side at the level of L5 facet joints. There has been a corpus luteum cyst in the right ovary on ultrasound August 2022.

On the current study the parametria vessels do not appear dilated and similar calibre vessels seen on ultrasound images.

No complex or haemorrhagic adnexal lesions. An indeterminate ovoid shape nodule in right iliac fossa adjacent to the psoas muscle is most likely to represent normal size lymph node with a short axis measurement of 7 mm.

After this I began to get worse symptoms… I noticed I couldn’t empty my bowels properly anymore. My lower back was in bits, I couldn’t sit in my chair at work for long periods, I had the bloating worse than ever before. I never went. It still hasn’t. I look five months pregnant mostly. But on a bad day I could look full term. I’m embarrassed and emotionally exhausted. The fatigue started, I now cannot urinate properly and have to lean forward to let it pass. I can’t pass wind properly. It feels like I have a blockage of some sort? I started to get leg pain in the tops of my thighs. Chest pain has been a more recent new symptom.

I was admitted to hospital for a second time in July 2023. They finally started taking me seriously and suggested it could be endometriosis.

I had my first lap yesterday. To be woken up to “we didn’t find anything. Your insides are beautiful” we will be discharging you and will require no follow up. I freaked out and didn’t know what to do with myself. Before I was put to sleep I cried to the nurse and said “please don’t wake me up unless you can get rid of my pain” - super selfish I know. But in that moment I panicked and just wanted to wake up better. To hear “there’s nothing wrong” I feel cheated and deflated. I know my body and I know something isn’t right.

I currently take the mini pill so don’t have periods. I took a break early 2022 for eight months to see if it helped. It didn’t - it was much worse. So went back on it.

My nurse advised me yesterday to call my drs Monday and ask for a bowel specialist or to be referred to a BSGE centre. During my lap she never looked at bowels.

What can I do? What should I do? I’m also took photos of all of my notes and have pictures of my lap. If anyone can compare photos or even look at mine who knows what they’re looking for I would be so grateful.

Am I alone? Am I being ridiculous. I had the fear before went down yesterday “they’re not going to find anything” - because I have been told for so long we don’t know what we’re looking for. I really have never felt so depressed and alone. I have a wonderful support network around me: partner, family, friends & work are so supportive. But equally they don’t know the pain. It’s relentless and I am trying so hard not to give up.

Some days are extremely bleak.

If you made it this far, thank you. Thank you for reading my story which still has no title.

Elli x

[GraceElli]

I forgot to mention. I had another ultrasound in July 2023 the last time I was admitted to hosp. They found a septated cyst on my ovary. Apparently this wasn’t seen yesterday.

[x_emily_x]

Bless you, Elli thats such an ordeal.I know exactly what you mean feeling cheated and deflated when you're told there's nothing wrong.

What they should have said is they didn't find anything. Endometriosis is very hard to diagnose, and while I don't know what is wrong, I do know that if you have had all of this experience already, as a grown adult woman and you feel there is something wrong, then trust yourself.

I had endo for a very long time without knowing it and there were many tests where I was told theres nothing wrong and its in my head. But I knew, I was sure. Partly because I had already spent 8 years trying to convince myself I was fine and didn't manage so no one else was going to at that point, but mostly because I couldn't escape the debilitating symptoms I was experiencing. I am taken seriously now and getting treatment I need which was a fight to get but it was a long time of not being believed and empty test results.

So, I believe you and I believe you need to trust yourself. Some self doubt keeps us grounded, but too much and you could neglect yourself. Take care of you my darling. You've done so good so far 💕💫

[x_emily_x]

And I'm sorry to not comment on your condition or potential conditions I just don't know anything about them, and wouldn't want to say something stupid. I just know that sometimes they miss things and when you are unwell you may have to push to get what you need. Hopefully they find it sooner than later and you have some relief. In the meantime, take restbite in your support network, suppport here and give yourself a break. We can be so hard on ourselves sometimes. Its okay to need some time to be upset and process things. I hope that doesn't sound patronising lol

[GraceElli in reply to x_emily_x]

Thank you for replying Emily. I really appreciate it and didn’t take any of it in a negative way at all. Just super grateful. I’ve been looking through my notes today and found that the lap performed was a lap myomectomy- on further research this is to treat fibroids? Which I have never had. My assigned gynae has an 18 month waiting list so I was lucky to be offered the one I had yesterday. But he specifically told me when the general gynaecologist performs my lap it’ll be a diagnostics lap and they will look at my women’s bits, bladder and bowels. She didn’t look at my bowels at all. I’m just so sad. Feel like I’m back at square one and not really sure what to do from here. I feel like I’m being dramatic and tell myself to be braver but it’s debilitating and really is stopping me live my normal life. I’ve been off work for over 2 months because the pain is unbearable. I can’t be the best mum to my children and that makes me so sad and feel so guilty. I just want answers. I’ve developed major anxiety and hate calling the doctors. I feel like I’m a hindrance to them. Sorry for the essay again. I’m sitting in bed drinking peppermint tea & recovering from my lap and don’t have much else to do. Thank you again for replying. ✨🩷🌙

[x_emily_x in reply to GraceElli]

I have felt exactly the same about the guilt and not wanting to call doctors, but you have to, hun. I agree with what someone else said here that maybe they weren't trained enough, there could be a myriad of reasons she didn't check properly, and okay, but you need to be checked properly. And yes they will sign you off. Short term is one less patient but long term its more strain of health care because meanwhile you're getting more ull without treatment. Thats how I look at my own situation. So of course you need answers and its horrible to fight for them and its hard and can make you feel bad but you're not alone in that.

The self care with the peppermint tea is the right thing to do, you're your best for others when you take care of you.

Something else I've learnt, very recently tbh, on this chronic illness journey, is sometimes my best isn't very good, but its still my best. You obviously care about people so don't beat yourself up. Its the last thing you need right now.

[x_emily_x in reply to GraceElli]

Stupid autocorrect, sorry it sounds like I can't speak English 🤣🤣

[Marcia71]

Agreed that you know your own body and do please keep pushing for answers. Search this group for posts by Lindle - or join facebook group facebook.com/groups/1148144... as that can h elp you get to the correct people to treat you. There is every chance you have endo and it's just been missed as a general gynae did the op when you need someone with extra training in endo.

[Noonehelps]

Hi Elli,

I can’t imagine what is running through your mind right now. I’ve not been offered a laparoscopy due to my size (according to the letter I have) and my gynaecologist hasn’t ever told me what she has put in my letter until I sent a ‘wings’ email to gynae secretaries back in September. However, the pain I get in my left side sounds like that you describe but I’ve always brushed it aside. I’m off to see a different consultant tomorrow. But despite no procedure, my current gynae suspects my advanced endometriosis stage 3 or stage 4.

So I’m still left not knowing. Until my appointment tomorrow.

Continue to ask questions.

Good luck

[MangoStickyRice]

I am so sorry that they haven't been able to identify the cause of the pain. Reading your story - most of the things you mention resonate so highly with me - so many of the same symptoms, same timeline, same 'we found nothing' outcome. I'm 12 days post-op from the lap and am channelling everything I can to fight for what I want - which next is an MRI. I have a meeting with my GP this week and I'm not taking no for an answer. My lap gynae consultant said my pain isn't gynae related but I know so intensely that it is. Stay strong GraceElli - make sure you communicate with your support system

[GraceElli]

thank you all for your supportive messages. The last few days have definitely been emotional for me. I have found comfort from reading this thread. 🩷 I have emailed PAlS and also my local MP. She responded today via email and is contacting PALS herself. (She and I are not sure what this will do, but it’s something and I guess it’s one more person with power hearing me shout through the pain) - Lap stitches healing well. Tummy has gone yellow/purple from bruising and my belly button feels tender other that than pretty good. Sadly the ovary/groin pain has returned with full force. My lower back is in bits and my upper thigh leg cramp in back. I spoke to my Drs I have to send a stool sample in and she is referring me to a gastroenterologist. My next step of anxiety is I know they’ll try saying I have IBS or a bowel problem. The issue I have with this, I didn’t have bowel issues until about 6 months ago. It has all happened since my ovary pain. The back ache, leg cramping, feeling sick, unable to use my bowels and bladder properly. Feel back to square one. I have requested a second opinion from my lap mentioned being referred to a BSGE centre and to have my bowels checked for deep infiltrative endo. I feel like I’m acting like a spoilt brat but at this point I don’t care. I need answers. Thank you all from the bottom of my heart for taking time out of your lives to reach out. I wish I could give you all hug. In a lovely supportive network that I have around me in my personal life it can feel so lonely. This thread has made me feel heard. And although you can’t fix me you’re helping a defeated girl stand up tall again and fight. Xx

[Busy23]

I cried reading all of your posts I was diagnosed with possible PID in November and have had on and off symptoms since. They said they aren't sure of the cause. They said I had lots of inflammation in my uterus and a small cyst on my left ovary which is the side of the pain. Hearing you use words debilitating is a bit of a relief because I feel like I am being so dramatic but it is. I have 2 children a husband and I work full time in a job I love and it's just affecting my life so much. I feel the GP surgery who are normally so fantastic think I'm bring dramatic and they put that through in the letter to gynaecology which isn't going to help me get seem sooner. I have written a complaint to the practice and asked advice from the patient liason too. How is your journey going. So happy to have found this page for support 💓