New here !! worried after surgeon said there were complications

Nearly two years ago I went to my GP because of heavy and irregular periods and bloating. A scan showed a 5 cm cyst. They said it would go on its own and they would monitor it.

3 months later I woke up with what I can only describe as labour like pain. I am a single mum, so instead of going to the hospital I ran a hot bath, this eased the pain and so I waited until the morning for the GP ( I was told I had IBS) . After a few days of keeping going back with dull pain and a large bloated tummy only to be kept getting told I had IBS they finally referred me to the emergency clinic.

I was in agony while they examined me, but again I was told I had IBS or cystitis( because my bloating wasn't constant) I was due a scan the following week anyway, so they didn't scan me. The scan did show the cyst had ruptured, but because it was now only 4 cm they said it was rectifying itself and no further action wan needed.

Fast forward to now and after lots of GP visits with pain and bloating and needing to urinate urgently they finally scanned me again after having blood with bowel movements for 3 days.

The scan showed the cyst had grown to 10 cm. 8 weeks later I had surgery to remove the cyst, my ovary and Fallopian tube ( last Thursday).

When the consultant came to see me he told me the opp was more complicated than he thought. He couldn't remove the ovary and instead had to reconstruct it. He said I had masses of Endo that must have been building up over years and that this has fused my ovary to my bowel and kidney. He wants to see me in 3 months, but said I may need further surgery. This will be major surgery with a bowel and kidney specialist involved.

I am naturally worried and trying to get my head around all this and wondered if anyone else here has had similar surgery.

Also I had a retained placenta with the birth if my son ( hes 13 now) which had to be manually removed, does anyone know if there is a connection with this and Endo ?

Sorry for the long post. I just feel so confused, alone and ill informed.

[Suzied2b]

Hi there, omg it seams like you had some worrying times. I'm not sure of any connections to placenta and endo. But I do know endo can attach itself to pretty mucheap anywhere hence them saying ovary removal was not made. Refarming further surgery it's good that they will have a bowel and kidney specialist involved. I myself suffer with Endometriosis and it's ruined my life so I can totally understand your concerns. I know that's probably not helped but feel free to message me if you want to talk more endo or anything xxxx

[Hidden in reply to Suzied2b]

Hi Suzied2b

Thanks so much for your reply, its great to have people to talk to and share experiences with. I appreciate this

[Suzied2b in reply to Hidden]

Not a problem you seam times get secluded into your own four walls and drive your self insane thinking if you talk to friendsomeone and family they won't understand. It's good to have other people in the same or similar situations. Feel free to message me anytime xxx I'll try response as soon as I can xxx

[Hidden in reply to Suzied2b]

Thanks, yes I'm just getting my head round it all and sending myself a bit mad if I'm honest. I read somewhere that someone lost a kidney from the condition. Plus I still don't feel well from the opp ( lot of blood lost) so that isn't helping.

It was only two weeks from seeing the consultant to the surgery and now finding out all this time I have had Endo. I am now wondering if they had taken me seriously 18 months ago then my condition may not have become so bad as to affect my kidney and bowel

I just have so many unanswered medical questions and I guess they will not be answered until I see the consultant again.

I just cant believe that something that can cause so much pain and internal damage is not taken seriously by the professionals.

Thanks again for your support xx

[Suzied2b in reply to Hidden]

Yeah it's definitelyrubish that there's not much awareness out here about it and not much that can can be done. I'd be happy to just find some pain relief that worked. It's such a disheartened condition. I hope you get your answers amd just keep pushing don't let them fob you off. Be abrupt if need be as I don't think they understand what we deal with. Xxx

[Starry]

Hi Hidden thinking of you. X x x The discovery is so often far too late. Given there is bowel and other organ involvement you need to be treated by a specialist BSGE accredited Endo centre which have advanced excision training and multi disciplinary teams set up. This is specified in the NHS treatment contract for severe Endo. Has your general gynae referred you over? bsge.org.uk/centre/

[Hidden in reply to Starry]

Hi Starry,

Thanks for your reply. No, he didn't mention it. I only had the surgery on Thursday and he spoke to me about it on Friday. he wants to see me in 3 months ( which seems a long time to me ) and I guess he will discuss it then ?

I will check this out though and maybe mention it to my GP ?

[Starry in reply to Hidden]

Yes your GP can refer you , it does not need to be your general surgeon though he absolutley should be referring you on many do not know to do so.

This is the NHS contract and specification

google.co.uk/url?sa=t&sourc...

google.co.uk/url?sa=t&sourc...

"Laparoscopic surgery for severe or recto-vaginal endometriosis is considered to be a specialised service due to its complexity and high risk of morbidity. The British Society for Gynaecological Endoscopy has established criteria (see reference in section 6) for centres carrying out such work and accredits departments that reach its standards. The criteria include:

o working in a multi-disciplinary team with a named colorectal surgeon and nurse specialist

o holding a dedicated endometriosis clinic

o operating on a minimum number of patients per year

o submitting operative and quality of life outcome data to a national database

These criteria are designed to ensure quality care to women with complex surgical needs to minimise the risk of surgical complication and maximise the opportunity to deliver the best outcomes. Effective experienced care such as this will reduce the cost to the taxpayer by reducing the current experience of multiple less adequate procedures, long-term medication, multiple hospital investigations and recurrent admissions.

Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians. Gynaecologists in secondary care who identify severe endometriosis or rectovaginal disease at laparoscopy or open surgery will refer patients from secondary care to an Endometriosis centre. Laparoscopic images of suitable quality and format will be included with the referral wherever they are available as this will prevent the need for repeat laparoscopic pelvic survey after referral"

[Hidden]

Thank you so much, I am going to book an appointment with my GP and look into this.

Your help is appreciated.

Paula