I had my first laparoscopy in May of this year. I was supposed to have my post op 3 1/2 months afterwards but it’s been pushed right back until February. I’ve been diagnosed and I know the gynae said he found it deep in my bowels and other places. But the pain hasn’t gone away. I’ve got endo and adeno and I can’t work out whether the pain I have is from endo or adeno - I didn’t expect the laparoscopy to be a quick fix or to cure me, I’m not that naive but I had hoped for more than 1 month pain free.
My sciatica seems to have got worse. The last two months during ovulation, I’ve had a second period out of the other end and I’m just fed up of the pain and bloating. I am going to call the doctors but I guess I just wondered if anyone else has had this experience. I don’t know what’s going on with my body but it’s causing me to feel so defeated and lonely. I honestly don’t know what to do!
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singingelephant
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Ah thats not good I cant belive they have pushed it back that far away! I would not be happy and calling to demand a sopner appointment or you can try to contact PALS at the hospital Did he remove anything from bowel? Are you taking any hormonal treatments?
Hopefully GP can give you some answers or something to help pain. This is one hard long road xxxxx
I havent had my lap yep due October. My symtoms are are all bowel related so Im worried that he wont be able to do anything to treat if there is anything there as its just genral gyne xxxx
I’ve already called the hospital - going to see if my GP can push it a bit more. I believe he removed, cut away and lazered some away from my bowels, as well as my pelvic wall and freed up my ovaries. I honestly can’t remember much more.
I was offered the mirena coil during my lap but I declined it - been on 2 copper coils and the experience for me wasn’t great. Plus the added hormones of any kind seem to cause an imbalance and worsen my headaches/ migraines, doesn’t seem worth it. For me anyway.
Best of luck with your lap, I hope you get the answers and help you deserve! Xxx
I have a silmular situation in terms of still debilitating post op. Endo surgery in early July ( stage 3 to 4 removal of adhesions, ovary stuck to sigmoid colon, nodule in the broad ligament and suspected adenomyosis). As you said I didn't expect a miracle but I've only had one pain free day. Suffer with pain urinating and defecating ( altered sensation just get a stab and nor to urge to go) constant period type pain.And recently back and sciatic pain, leg weakness. I have had to move to my mums house and can't work.
It is absolutely appalling you are expected to wait so long for a post op check. Exactly as the name suggests should be near to surgery date! I agree with crazycatladyjones contact the hospital PALS ( the patient advice and liaison service). I had used them once before due to an incident that had happened at the hospital they were able to get a doctor to review and speak to me. They also have details of how to raise a formal complaint if needs be.
Long of the short is I was in so much debilitating pain I paid to go private for the lap. I had a post op 4 weeks later with a plan and I will unfortunately have to pay for an mri to see if deep in bowels ( my lap was diagnostic didn't know endo until in there). I started the progesterone only pill but it's early days absolutely no effect so far but this can take months I was told review in 2 months and change if still not worked. You should also be getting advice on medication and reviews.
You should be able to get your full surgical notes, medical history from the hospital. This is often digital via SARs but may be worth calling to ask the process and for the PALS number. I have used this to show private consultants whats go on and read what's been going on when there have been communication lapses by the hospital.
One option as you have said is see your GP ask if anyone in the practice has an interest in woman's health/endo etc. I'd seen about 4 GPS in the practice and finally found a very good one.
The other option ( I'd do both if possible) is getting all of your notes, images and paying for a private consultation. The consultant fee where I am is about £180. Dependant on what area you are in can vary. Try and read the profiles of the consultants / special interest endometresiosis. It is such a shame to pay for support you should have had all along but for peace of mind this is what I have been doing.
I would assume the appointment you are meant to have would be via an endometresiosis centre since its severe / found deep in the bowels? I basically obtained the contact details of the medical secretary of the consultant who runs the clinic in this region. I have sent surgical notes etc and have been told they can try and review however was told all endo is routine regardless of deep etc since its non cancerous. Not sure how much help contacting is but I was hoping being so annoying they'd be forced to even look at my case even if they do just say routine. Ask your GP the referral you have is it via gynae/ endo centre? Who is responsible for a plan in the mean time/ any reviews of hormonal meds in the mean time? It shouldn't just be surgery and that's it need medical management and support!!
I am sorry you are going through this and hope you get the support you need. It feels like I am a lawyer trying to advocate myself because simply put I feel the nhs is not looking after me I have to look after me. It's frustrating screaming into the void but please ensure they do not dismis you until February. Its unexceptable and I am truly disgusted by your situation. If there's anything I can do to help or just for a chat please feel free to message me. Send hugs.
Wow, thank you so very much for your detailed response. I’m feeling a little speechless after reading it. I’m going to take your advice - unfortunately I cannot pay for any private healthcare but I am under the endometriosis care centre, the gynae is highly recommended but it’s just unfortunate that it’s the nhs! I’m hoping to talk to my GP today. Thank you so much for your help. I’ll keep rereading and following your advice
Glad I can help a little bit. Yes severe/ deep endo should be via a specialist endo centre which is my issue too. The wait is too long and it seems too many women are suffering in the wait.
I think start with PALS, getting all of your medical notes etc ( ask pals how to do so). Pals can take upto 5 days to reply but I did call and marked my email urgent ( my situation was so complex I drafted an email for a consultant to see). I got a call back the next day to say they will try and get someone medically trained to talk to me ( 4 days later I'd spoken to a consultant) .
May be worth looking for a good gp ideally with an interest in women's health/ calling to get an appointment they should likely have your surgical records etc by now. Tell them you've had no aftercare at all more specifically someone should be discussing medical intervention to try and alleviate symptoms ( pain management options and the pill for example).
Actually mine have booked me tommorow for a physio to assess since I'd mentioned sciatic pain too. Never knew they had a physio on site, ask yours as well regarding this. For endo I want pelvic floor physio which is a bit more specialist ( this is supposedly possible via endo centres?) but for now some general physio for the nerve pain wouldn't go amiss. Nice to be an option without pumping money private again!
Yes private is really expensive and I appreciate not everyone is in a position to do so and even if we can we shouldn't be. I was saving for a house but its dwindling, my priority has shifted to trying to get back (or something closer to) the normal life I had before. And it's so sad so many women are facing the same. I saw a tshirt that said "Endo warriors!" and that's what we are!
Thank you again. I think I’ll get in contact with the PALS at the hospital for sure. Had an appointment with my go yesterday due to cyclical bleeding from my rear during ovulation and he’s referring me for a colonoscopy, as well as helping me chase up the hospital. He’s not able to see my hospital surgery notes yet, which is a pain.
Thats good your gp is taking some more steps hopefully this helps to get the ball rolling. They should be able to get the records/ surgical report and hopefully be able to go through this with you. If you struggle as I said SARs Is access to your own medical records took about 2-3 weeks when I first registered but now I find I get records back within a few days. It's sometimes handy to have access to this. I did put a link then realised its for Essex hospitals! Area specific so when you contact PALS maybe worth getting it for your area.
They can't operate on severe endo (which includes the bowel) at a diagnostic lap. Such complex surgery needs careful planning in a specialist endo centre after scans are done. So you wouldn't expect any relief unfortunately.
As has already been said I'd get a copy of the lap report plus anything else such as colour photos and histology.
Was this a basic diagnostic lap in general gynaecology because if so you should have been referred then to an endo centre - you don't need a follow up with the initial surgeon. You would then have a consultation at the endo centre, usually with the specialist nurse, and the surgical plan would go from there.
Hiya, thank you for your response. I was seen by a highly recommended specialist at a endo centre, felt very lucky, but it’s just a shame that the nhs is so under funded that things are pushed back etc. It was a diagnostic lap but he also treated it. I was debriefed on the day but due to the adrenaline and aesthetic, I can’t fully remember it all. I’m going to request my notes though.
I was able to take photos of my surgery photos but they didn’t give me a copy. I did ask for it but by this point, I just wanted to get home haha.
Assuming it was on the NHS in order to be in a specialist centre for the surgery you would have needed to have deep endo already identified so was this from a scan and is the sciatica one side more than the other?
Yeah, I had an internal scan done by my specialist gynae and then surgery. Sciatica is more on the one side yeah. The wait time for nhs is a nightmare.
My pain never went away either from my last surgery and I requested an appointment to talk about it and they told me there was nothing else they can do other than change my birth control again as they want to avoid doing another surgery for now. It’s frustrating having no answers all the time :/
I am so glad you posted. Lonely is awful. Bloat, you cope. Sciatica you swing. Lonely, you go looney. My only words for you are, get yourself a hot water bottle, Then chuck yourself on the sofa with a big fluffy blanket, a weepy book and a small shot of what sin you like to partake of. (not too much though, the wages of sin are fat hips.) You are allowed to have at least an hour of thorough going self pity. as a reward for all the times you have said "I am fine, I am coping! I can do this!" Cuddle yourself up and know you are identifying with Womankind. The ladies of Endo are with you!
I had my laparoscopy in January this year.I’ve always struggling with period pain since being 12 and I’m 24 now, luckily I have private healthcare with my job so managed to get the surgery pretty quick once I had my initial appointment , I’d never even heard of endometriosis until I went to a private gynaecologist never mind even been diagnosed with it! I had the Mirena coil fitted while I had my laparoscopy and honestly couldn’t tell you if it’s help, I bleed less but the pain is awful. Really unsure whether to ask for it to be removed but don’t want to do that and the pain be just as bad, if not worse. (Does anyone have any experience with this?) Still struggling with pain massively, can’t walk a lot of the time with it and now starting to get similar back pain too. I’ve been prescribed codeine for the pain but only take it when it is awful as it makes me super dizzy.
Reading this post made me feel much less alone and isolated. I’m so fed up of being in pain and feeling like this is forever now. I’m hoping you get answers as I know how frustrating and heartbreaking this journey can be, sending lots of ❤️
I’m so sorry to hear you’re suffering. I opted not to have the mirena, can’t cope with the coil or extra hormones🙈. Take to your gp about the pains though! I’m glad my post gave you some kind of relief/ reassurance. You’re not alone. Sending you lots of love, thank you for your response ❤️
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