I’ve been under investigation for endometriosis/ ademonyosis. Had a US in November that showed a 4 cm hemorrhagic cyst that they said was probably an endometrioma , had a re scan 2 weeks ago and was told they couldn’t see it anymore so must have gone.
Because I went to a&e twice last month with pain in my left side and rib cage my gp wrote to the gynaecologist to ask for an MRI scan, he responded and advised I have a laparoscopy first so that happened yesterday. It was a general gynaecologist that did the surgery and I didn’t not speak to him before or after, it was supposed to be a day case and I was advised I would have 1/2 incisions. I woke up with 5 incisions and it so much pain I had to have morphine injections. I was kept in for over 24 hours.
My question is I have had nobody go through what happened really (I had a trainee nurse with me who was supposed to be going through everything that happened and showing me notes/pics etc) but when I came round from surgery I was taken to a different department and unable to see her. I asked the nurse there and she told me I had a 4cm cyst removed from my left ovary and ‘superficial endometriosis’ removed then advised the surgeon would be in touch by telephone in 6 weeks. I feel very odd like I don’t know if that’s it now do they just leave things this way or do I see my consultant again? Please help a very dosed up confused woman in lots of pain!
p.s if anyone had any tips on shoulder and rib pain I have drank lots of peppermint tea and it’s not helping 😢
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Gingerlove195
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I know exactly how you feel, had my 2nd surgery a couple of months ago. Ended up in terrible pain after waking up and a high temperature so I had no clue what was going on, had high temperature and on fentanyl when the nurse went through everything ( remember nothing) . I had a look on the NHS app, they send a discharge document explaining what they did! All dosent make sense as but with help of Google I sort of got the sense of what happened. I was lucky I didn't get shoulder pain this sugery, my previous surgery suffered from it I was just drinking pepparmint tea like you do but it didn't take the pain away , it went away after a few days though.
Thank you 😊 I have checked my online nhs and it keeps saying unable to view medical records which is frustrating! I’m so disappointed I wanted to come away from this surgery feeling like I finally have some answers for the last 3 years of pain tests scans and a&e trips but I feel more confused then ever with even more pain thrown in to the mix! Hopefully I’ll get some answers tomorrow x
This is awful you poor thing. I'm shocked you've been treated like this. The shoulder pain is the gas so just be patient and keep chugging the peppermint tea. I think perhaps one of your cysts may have burst hence the trips to A&E. I don't understand why they would offer you surgery before an MRI but then they tried to do a hysterectomy on me and I hadn't had an MRI. I woke up not having had the operation as they discovered stage 4 endometriosis had fused it all together. The thing that shocks me is that you didn't meet the surgeon before or after the operation and that's wrong. I would put in a complaint through PALs regarding that. Next I would contact his secretary and ask for a copy of your notes. I'd also explain the situation to them and request an urgent phonecall for him to contact you to explain everything. My surgeon rang me a week later to explain what had happened. I'd already seen him post op but I couldn't process anything and I was upset too. Keep ringing the secretary and if you don't get a response speak to another secretary. I often do this and you get results much quicker. Finally ho through your GP who can also contact them. Depending on what they found, you should have a follow up appointment but it could just be a call. If you keep ringing and you are persistent then it may be expedited. The good news is that it's only superficial endometriosis! Look after yourself and take it easy as abdominal surgery takes months to properly recover from xxx
Thank you so much! Yes I do think a cyst had burst previously because I was bleeding also and I don’t have periods since having the mirena. I was supposed to see the surgeon after I think but it was so late- I remember going down to theatre around 3.30pm and waking up around 7pm, they told me I came round very quickly so I presume I was in surgery for a long time. Is 5 incisions normal? I was told 1-2 incisions beforehand, also my tummy is full of bruises even where there are no incisions. I’m in a lot of pain and it’s just so confusing not knowing where the endo was found etc.
I am going to ring my consultants secretary tomorrow and see if I can get a copy of the surgery notes as that will help me process things I think. Would they have a copy even if it wasn’t my own consultant that did the surgery? Or am I best ringing the gynaecologist that did the surgery?sorry for all the questions 😢
I would start with the secretary and your GP and go from there. The notes should be with your records. Kill them with kindness to start with - medical consultants don't like being told what to do and you'll get much further if you are ultra polite and curious than aggressive and demanding. I don't know about the cuts - usually it's 2. I had 4 as they thought they were doing a hysterectomy. This is WHY you need your notes. Good luck x
I would be concerned that a general gynaecologist treated Endometriosis because they likelihood they left some behind is high. 5 incisions is pretty standard for robotic laparoscopies (I had one 9 days ago) but a general gynae would not use this. If you google your hospital name and “subject access request” you can request the notes from your surgery and they have 28 days to give them to you. This will show you exactly what was done. If they ablated, I fear you will not have much relief for long as it does not remove the endo.
Gas pain is a nuisance but does go within a few days. Gentle movement helps - even if walking to the bathroom!
Hi, sorry you've gone through this. I second what everyone else has said regarding contacting PALs/submitting a subject access request for your notes (you can also request your images - ask for in colour) which you can print off & take to your next appointment & get them to talk you through. For the gas pain, I'd also recommend a hot water bottle on your shoulders, & a bit of walking around if you can manage it. I've seen in other groups Love Hearts (the sweets) are often suggested but haven't tried them myself. Also I had 4 incisions during my diagnostic op if that helps offer some reassurance. Good luck & hope you recover quickly.
you can submit what’s called a subject access request to the hospital that did the laparoscopy and get all the notes from this surgery. It’s free to do. The website should tell you how to do it and may even have a form, to fill out. Do it soon as they have 28 days to reply and you should then have it for the follow up call and you’ll be better informed.
If you search group for posts by Lindle you’ll learn a lot.
So sorry you are going through this! Defo agree with what everyone has said! But in regards to shoulder pain - when I had a cyst removed via a laparoscopy I was in agony with it! So I prepared for my lap this time! I drank lots of peppermint tea but I think the game changer was the Rennie deflatine tablets (attached a pic) coz I didn’t suffer much and a long hot water bottle around my neck helped too! Xxx
I would ring the ward you were in and speak to to nurse/ matron . I did this and spoke with the matron. She was very good and explained all the aftercare etc to me
Re : my surgeon, I didn’t see her either before of just after the surgery. I think it’s was 3 -4 weeks later also .
It’s going to be a tough few days with pain & discomfort, try walking little and often to help with gas/wind . Take it one day at a time , you’ll get through this.xxx
A diagnostic lap would be the correct course after a negative ultrasound unless severe endo was suspected from a clinical exam (nodules felt on an internal). But this should only be done by a gynaecologist with a special interest in endo meaning additional training. Whether this was the case or not, they would only be qualified to treat what are described as uncomplicated endometriomas and superficial disease, being that limited to the peritoneum (pelvic lining).
The worry here given the number of ports and length of surgery time is that they might have attempted to remove what might have been more than truly superficial disease. If anything more than peritoneal disease was found they should have come out and then ordered an MRI with onward referral to a specialist endo centre.
As advised put in a subject access request and we can go from there.
thank you for this. I have applied for subject access request. I have checked my patient access this morning and my health record has been updated with Endometriosis diagnosed and Ovarian Cystectomy (left) with the date of my surgery but with no comments or further info so hopefully I will get more info from that. The 3 ports are on the left side close together then 1 on the right 1 central so I presume this is due to removing the cyst on the left side- it’s the not knowing that is causing me so much worry.
Another question- will I still be under the gynaecologist who is a specialist in endometriosis even though he didn’t do my surgery or will I now have to see the general surgeon? Thanks
Who you are now treated by will depend on what the report says. In any event now you have a diagnosis you must only see someone with a minimum of a ‘special interest’ in the condition.
If the cyst was an endometrioma then these are usually associated with rectovaginal disease which is classed as severe, and usually affects the left side. So it will be interesting to see what the report reveals.
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