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Desperate plea for advice on PGP/laparoscopy

(15 Posts)
heythereconniver Wed 18-Jan-17 20:52:49

No idea where to put this so posting here for traffic.

I would be so grateful if anyone can advise.

Six years ago I had a laparoscopy for endometriosis followed by induced menopause. Shortly afterwards, I became pregnant and developed mechanical instability in my pelvis. I was mainly in a wheelchair for a few years but am now so much better and able to walk - I have my life back. However, I can only do so much and have to be careful. There is arthritis at the front of the pelvis and it will always be very fragile.

I've always been terrified that the endometriosis would come back because I can't contemplate having a laparoscopy and possibly ending up back at square one, back in a wheelchair. I was almost suicidal before.
I've been experiencing sudden nausea during menstruation for the last three cycles. It has got worse and on this cycle has lasted for a week. Alongside that, I have had lower abdominal pain that set in at the tail end of bleeding and, two days later, is still going. The pain is a dull ache that radiates outwards through my right hip and down my leg. It feels like the pelvic girdle pain during pregnancy felt.

I don't know what to make of the nausea and post-period pain. It feels like something is getting worse quite quickly, but what is happening?

Does anyone know of a consultant who specialises in treating both endometriosis and mechanical instability? Most gyne consultants I've come across don't know much about pregnancy-induced pelvic instability as a long-term condition. I'm afraid they would carry out a laparoscopy without believing that it could leave me in unbearable pain, in a wheelchair.

Thank you so very much to anyone who can help.

Pregnancy test was negative, by the way.

ProseccoPoppy Wed 18-Jan-17 21:49:12

Gosh that sounds awful. I don't know about pgp but my consultant David Griffiths was really excellent with my endo and so might be worth a chat - www.octaviahealthcare.co.uk

ProseccoPoppy Wed 18-Jan-17 21:49:52

Really hope you get the help you need very soon flowers

Vanillabanilla Wed 18-Jan-17 22:09:56

I am not medical but would have thought that you need to see two different specialists. A gynae endo specialist and an orthopaedic consultant specialising in pelvis / hips. Are you also seeing a physio? That would be my plan based on my own experience but like I say, I'm not in any way health qualified. I hope you get sorted.

Peanutandphoenix Wed 18-Jan-17 22:18:50

I don't have any advice and I didn't want to read and run so just wanted to say I really hope you get sorted out soon OP flowers and hugs.

heythereconniver Wed 18-Jan-17 22:26:55

Thank you so much for the responses.

vanilla Yes I agree but would need the two consultants to talk to each other.

poppy I will add your man to my list of people to contact - thanks.

Vanillabanilla Wed 18-Jan-17 23:05:47

Also GP whilst you are researching your options to checkout your new symptoms. Best of luck finding people.
I know some of what you are going through and it sucks (understatement). flowers

ChazsBrilliantAttitude Wed 18-Jan-17 23:33:54

Another name for your list
www.blizard.qmul.ac.uk/staff/51-centre-for-primary-care-and-public-health/618-ball-elizabeth.html
She also works privately.
She teaches laparoscopic surgery as well as being a surgeon.

ILoveMyCaravan Thu 19-Jan-17 00:51:29

I would recommend you contacting Professor P Gianoudis at Leeds General Hospital. He's an orthopaedic surgeon specialing in PGP/pelvic reconstruction. Don't know where you live but he is definitely worth the journey, he's amazing.

heythereconniver Tue 24-Jan-17 00:00:36

Thank you to everyone, I've made a note of all the names and have actually already seen Prof Giannoudis I love - he was great but open about not specialising in endometriosis. Tried Griffiths and a Mr Trenher on Harley Street.

Scan revealed a relatively small (4-5cm) chocolate cyst on the right ovary (where the pain in my hip is). I started a progesterone pill last week that will hopefully shrink it over the next few months to the point where I don't need surgery (which would be awful if it happened). Only problem is, progesterone loosens all your muscles so the support that was in place for my delicately realigned pelvis has disappeared, leaving pain and loss of mobility. After two years of having my life back, I'm not disappearing back there without a fight.

I'm still looking for a gynaecologist who specialises in both endometriosis and symphysis pubis dysfunction,. Also looking for a hormone therapy treatment that will repress the cyst without having the side effect of being a muscle relaxant. Such a thing may not exist!

Belleende Tue 24-Jan-17 07:38:33

You might want to try a different approach. I cancer the treatment for each patient is discussed and decided by a multi disciplinary team. This includes surgeon, oncologist, radiologist, nurse etc. Together they decide which course of action is best for the patient. You might not get all the specialties you need in one person, next best is getting them in one room to discuss how best to treat you. Best of luck

MiaowTheCat Tue 24-Jan-17 08:03:52

Message withdrawn at poster's request.

heythereconniver Tue 24-Jan-17 09:24:58

miaow I'm so sorry you have ongoing problems too. Have you ever been given manual therapy? It should be available on the NHS from a well woman physiotherapist.

I've found the lady who runs the charity Pelvic Partnership incredibly helpful. I had really given up all hope of making much progress and she kept suggesting new things to try. Just had a look on the website again and it says (in FAQ) that exercises tend not to work properly unless your pelvis is being realigned manually as well, which is why the 'support belt and advice' that gets handed out during pregnancy is worse than useless. www.pelvicpartnership.org.uk/pgp-longterm

belle Yes I would need these specialists to talk to each other!

fuckity67 Tue 24-Jan-17 13:07:01

Friend of mine had something very similar happen to her. She saw some guy up in Portsmouth. Francis Gardner who apparently is an endo expert.

Told my friend about this thread. she said he's apparently down in Harley St if that is more convenient? I googled and got this 25harleystreet.co.uk/our-experts/theatre-team/

heythereconniver Tue 24-Jan-17 14:49:54

You're so kind fuckity, thank you very very much.

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