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My 15year old daughter has had pelvic pain since her last Laperoscomy in Aug 2011.She has been passed from one consultant to another with each one implying she should not be in pain with the cysts she has had come and go they have now said there is suggestion of PSO and again this should not be causing her pain. She has not been able to attend school for 18mths plus due to her pain. The school have now passed her case to the Education welfare people because I cannot get a Dr

to give a diagnosis and say she is not well enough to atted school. She had her first enlarged cyst removed at the age of 11 and the procedure to drain a cyst in 2011 seems to have been the time when all her pain really started. She is just waiting to see a Gynacological consultant again after being reffered back from the gastoentorilogist any feedback would be greatly appreciated Janice

11 Replies

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  • This sounds more like endometriosis to me than PCO. What part of the country are you in ?

  • Hi Janice,I sympathise with you ..keep pursuing there has to be an answer ..our bodies are complicated things ..but I understand how you feel going from one to another doc or specilist..she is very young and missing out because of this problem.and pain....has she had a CT scan ?it sounds like the bowel perhaps ..where were her cysts?gastoentorilogist perhaps a different one ?..............I found I had divaticuler by this method ..(pockets in the bowl) though she is very young for it ..

    keep trying for her .Bless you ...

    Good Luck Margaret

  • Hi,

    I can really empathise. My daughter is 16 and has been diagnosed with endo but nothing seems to help with the pain. She has taken nearly the whole of her final GCSE year off because she can't cope with the pain. School have been awful but the educational welfare officer has been great. However, we did manage to get several letters to back up our reasons for my daughter not going to school from consultants. Is there a doctor who will write a letter saying that your daughter is under the care of doctors and the pain is still being investigated? This is what we did at the beginning which was a couple of years ago and that seemed to help with regard to EW.

    How is your daughter coping with everything?

    Sarah

  • Thank you so much for all the replies. Judy we live in Essex. Margaret she has had numerous Ultrasound and MRI I`m sure she has had CT as well. Sarah thank you for your reply it has made me feel a little more at ease before my first meeting with the EW on Monday. The school attendance officer has been no help from day one with threats in one meeting with my daughter and me saying to her how would she feel if I her mum was sent to Jail.

    My daughter had her first surgery in Oct 2008 at the age of 11 after she had been rushed into hospital with what I thought at the time could be meningitis. Months leading up to this she had been suffering with various infections and too and fro from the GP surgery to be told there was nothing wrong with her. When she was admitted to hospital it took a week with my daughter still complaining of lower abdominal pain, before a female doctor eventually examined her to find the lump down below and she was scanned then rushed into surgery the same day, where a very large benign cyst was removed taking away a large part of her left ovary at the same time.

    She made a good recovery from this surgery until the early part of 2009 when again she started to get similar symptoms to those she had prior to her Op again I felt the need to take her in to hospital to be discharged with no cause found. The pain continued and eventually she had a scan in June 2011 which confirmed a endometriotic cyst on the right ovary, this is the one the consultant had supposedly removed under the laparoscopy in August. It was only months later at my request for details of what procedure had actually been carried out we were informed that the cyst had only been drained. This same consultant also indicated that there were quite a few adhesions that she had to divided yet at a later follow up appointment when asked if the adhesions could be causing my daughters pain she said there were hardly any adhesions. On once again rushing my daughter into hospital in Oct 2011 due to the acute pain,this same consultant also said to me "I think your daughter has a brain problem", implying the pain was all in her head. In Nov 2011 she had another possible endometriotic cyst on right ovary. Scan in Jan 2012 showed no cyst.

    I subsequently requested a referral to another consultant at another hospital. Initially she was referred to a Paedatrition, since they were still saying she should not be having any pain. They just prescribed treatment for constipation??? then a follow up appointment in 4 months time. In the meantime I requested a referral back to a gynaecologist July 2012 we finally got to see another gynaecologist who although found another cyst presenting after a further scan in August said it was up to us whether or not we wanted her to operate and to come back in 6 months time. I requested to see yet another consultant for a second opinion. Saw new Gynaecologist in Nov 2012 and since cyst was smaller than 5cm did not recommend surgery and still saying this should not be the cause of my daughters pain, suggesting a referral back to a gastroenterologists which brings us up to date with the most recent scan showing a suggestion of a poly-cystic right ovary.

    Sorry this has been a bit long winded but just wanted to get all the facts down.

    As far as coping my daughter is doing remarkable well considering she seems to have no one other than myself believing her and the pain she is suffering with, how is your daughter Sarah? Once again any feedback is appreciated, its good do realise we are not alone in our constant battle Janice x

  • Janice,

    Has your daughter been offered any medical treatment ? if so what has she tried ?

  • No none because I think all the consultants and even our own GP do not believe she is in pain.

  • The only suggestion made by both our GP and the original Gynaecologist was to go on the pill, which my daughter really does not want to do.

  • Has she tried mefanamic acid ( anti-inflammatory ? ) there are also a couple of others that may help

  • No I have just had a letter through for an appointment for her with the Pain management team in the Pelvic Pain Clinic at Broomfield hospital on 23rd July. Just confirmed an appointment with the Gynaecologist who is away on holiday until the 24th June I will mention this then.

  • Another that may help is Naproxen - this is available over the counter

    Good luck at the appointment, interested to know who you see there. Is the gyne appointment in addition to the pelvic pain clinic ?

  • Thanks again Judy, yes she has two separate appointments. Fingers crossed.

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