Daughter and ovarian cysts at 20 years of age

[Numberone1]

Im in quite a state today about my Daughter. She has had a brown discharge continuously for 1 year. She went to the doctors who put her on the pill for 3 months. This lessened it but it didnt go away. She went back to the doctor and they ordered a scan which of course she had to wait for. Once that came through, she then had to wait for the results which showed 2 large cysts on one ovary and another cyst on the other ovary.

She has now been to see the Consultant. They have booked her in for a laparoscopy to remove these cysts. However they have also warned her the surgery could be more invasive and that she may lose her ovaries.

That was it. No mention of counselling, egg freezing, complications of sudden surgical menopause. Nothing. I am so distressed for her. She hasnt even had sexual relationship yet and yet she may be entering an early menopause.

Surely there is something more that can be done? What should she be asking for? Fertility clinic? Second opinion? I doubt the second opinion will show up much else.

Is there a specialist consultant that can show greater feeling for a young girl with options that are more suitable for her and preferably on the National Health?

Help please. She isnt talking much about it. She doesnt want to talk much because she is also a Type 1 diabetic so health issues are predominantly in her mind and she's fed up.

Thank you.

[cuddlybear]

Hiya...OMG u poor ting,my hearts goin out 2 ur daughter.....I was d same at her age(am 41 now)and I am absolutely horrified by d way d consultant treated her...I wud STRONGLY advise a second opinion.....d consultant I attend said no matter wot he wud do everytin in his power 2 look after me n no matter how bad or big d cysts wer he wud never even consider takin my ovaries n wud defo b able 2 get cysts n keep my ovaries to which he did.....dis was my 3rd opinion.....Not in a million years wud i let him go anywer near ur daughter,d impact of losing her ovaries n menopause wud b horrific,am in complete shock by her consultation....Trust me wen i tell u dat der is hope n der is another consultant dat will help her as well as hav a heart....go back 2 her GP n tell dem 2 refer u on 2 sumone else,even if u hav 2 go thru a different hospital....my hearts going out 2 u both bt dont give up hope...i had 2 hav my cervix,womb,fallopian tubes n one ovary remained which has 2 large cysts on it n will b goin in 2 get dem removed in a few weeks and I asked him wud it b better to jus remove d ovary n he said ders no way as I wud hit d menopause straight away n he wud never put a patient of my age(41)thru dat type of surgery.....I hoped I helped a bit but please dont b bullied into dis surgery...der r plenty of consultants out der,d first ting 2 do is go straight back 2 her doctor n get an urgent referral onto sumone else,if u hav any other questions no mater how trivial u tink it is u can always pm me and i will try n help u as best i can....Best of Luck x

[cuddlybear in reply to cuddlybear]

I meant 2 say dat 5yrs ago I had 2 hav my cervix,womb,both fallopian tubes n one of my ovaries removed...d onli ting i hav left is my right ovary n he said he wont remove it til im 50 n keep gettin cysts on d ovary bt he still wont remove it

[hayls]

Hi

I really feel for you and your daughter, it's definitely a emotionally draining trying to get the right treatment, I'm so glad for your daughter that she has you on her side.

Firstly I just want to say that gynaes will always warn that there is a risk you could lose your ovaries if they are going in to operate on them, they wouldn't be doing their job if they didn't warn patients of this, however they really do not know what is going on until they get in there and its a worse case scenario. Unfortunately a lot of gynaes aren't very tactful or sensitive in the way they say it and it comes out very matter of fact and a bit more definite than its true!

Have the doctors suggested that it could be endo? If so, if you are not happy with the current gynae the best option is to get a referral to a BSGE accredited endo centre, she will the see an actual endo surgeon who is much much more experienced and so much more technically experienced so hugely reduced risk of surgery going beyond was is necessary etc.

Sometimes it can be tricky getting a referral to an endo centre without already being diagnosed with endo, in that case it may be an option for her to go ahead with the diagnostic lap but be VERY VERY clear in the consent form that she is not consenting to any organs being removed etc. Also bear in mind that the theatre time allocated to diagnostic laps is very short (often only 15-30mins) and because of this it is more common than not that the surgeons don't really do anything beyond looking around to diagnose problems (eg. endo) and drain cysts etc, maybe clear a few adhesions but that's about it. It's typically just a starting point for further surgery to treat any endo etc and/or other treatment options.

However I wouldn't leave things as they are currently with the gynae, I would phone his secretary and say you have some concerns about what was discussed/raised in the appointment and you have a few questions before having the lap and preferably get his email address so you can send him an email setting out your questions and concerns - eg what is he actually planning on doing in the lap, is it diagnostic lap only plus sorting cysts and if it is what is the risk of ovaries needing to be removed in this op (in his opinion), other risks and likelihood of those risks in his opinion. Your daughter will also have a pre-op where she would again be able to raise questions but often the pre-op nurses aren't that well informed on each case, depends if they are gynae nurses, often thy are not so varies completely hospital to hospital.

Other option would be to go private for an initial consultation for a second opinion, if its suspected endo then this needs to be an actual endo specialist. Often you can get referred back on to the Nhs as most private gynaes also work on the Nhs. With my gynae an initial consultation plus u/s scan is about £450-600, but I know he has seen a lot of women private and the switched them to his Nhs list for the surgery etc. My gynae is brilliant and I would fully recommend him (can't name names on here but can message you his details if you would like them), I recently had extensive excision of severe stage 4 endo with bowel, uterus and ovaries all very stuck, cysts etc, loads of old cyst tissue etc and everything has been freed with no damage or losing ovaries etc. Other gynaes told me only option was a hysterectomy! x

[Numberone1 in reply to hayls]

Thank you for your advice. They have told my daughter that they think it is endometriosis and that the cysts are endometria? The letter to her gp states that they will perform a laparoscapy but that they may have to perform more invasive surgery. They also said to her at the appointment that they wont know if they can save the ovaries until they have a look! It all just seems too dramatic to me. I already have booked an appointment for her with Mr Trehan for the intitial consultation and apparently he also does a diagnostic laparoscopy first. I think we need to go to the GP, express our concerns and ask for her to be referred to the Centre of excellence for Endometriosis. I am a bit scared that she will have her laparoscopy, they will make the diagnosis there and then and then perform whatever is needed without her having a chance to think about it.

[cuddlybear]

Hiya,defo go back 2 ur GP to express ur concerns......my advice regarding ur consultation wud b to write down every question u wan 2 ask as hav found dat once dey get talkin bout d endo n medical jargon u kind of get wrapped up in listening 2 everytin der saying n cum out forgetting sum of d questions u wanted 2 ask.......Dont b scared bout d laparoscopy as u hav 2 giv consent 2 agree 2 d laparoscopy and u also hav 2 giv consent to let dem perform whatever dey feel is needed,so dont sign and make sure u get heard dat u wan a diagnostic laparoscopy,cysts removed and dats it,...ur daughter does not give her consent for either of her ovaries to be removed full stop.....without her consent dey cant n wont remove her ovaries......as for her GP you insist dat shes referred on to sumone else......Best of luck and dont forget ur not alone and if u need anymore advice or support just ask