Any advice welcome

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Endo / pne/ pelvis/ involuntary arousal/ lap gone wrong!!!

I would like to share my story and current situation via Health Unlocked in order to speak with like minded individuals who might be experiencing the same condition. Thank you in advance for taking the time to read my post. I am a new user.

Back history:

I had extremely painful periods all of my life. I had a scan which showed a 10cm ovarian cyst. I I had a laparoscopy 2 years ago to remove it. The gynae drained it and the report stated she had removed small spots of endo also and found filmy adhesions on my bowel.

After lap I was discharged, placed on a hormone injection- which made me extremely ill, so I was placed on Norethisterone. It took me 3 / 4 weeks after my op before I could even get out of bed and walk.

Ever since my op I have been in constant pain for 2 years. I have had severe abdo pain, upper and lower with no respite. Smear test and gyane test are extremely painful, sex is the same. I have a tight contracting sensation outside the vaginal wall / near perianal area when aroused. For the last year I have pain in an upward motion just when I am finishing urinating. It doesn’t seem to go past my belly button and seems not to be inside the urethra but more on top. I have involuntary arousal from my cliterous that is ruining my life and seems to be persistent and constant. When I push the area around the belly button and below I get a sharp pain on the area and down below. I feel as if the centre line from belly button to cliterous is being pulled upwards and is very tight. When I lean backwards I have a sharp pain down below. When I sit up in the bath the area just before the top of the pelvis feels like there is a foreign object present / I am pressing on something.

The communication between my GP and I has broken down and it is obvious that the duty of care is no longer present. It is highly embarrassing divulging such information and I receive no help. I am at a loss as to what to do, as no one understands, nor can appreciate what it is I am going though and physically feeling.

•Can anyone offer any words of advice

•possible diagnosis,

•useful contact information of well learned individuals within any relevant field,

•share their own stories please.

Many thanks

10 Replies

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  • can you contact speciliazed doctor not gp you want one doctor experince in gayne and pelvic nurourolgy i suggest for you dr beco in belgium you find information for him in list of eurobe doctor at pudendal hope .com

  • where do you live?

  • If you are in UK, you can change GP using the NHS Choices website, you can look at the practices in our area and it shows the specialities of the GPs.

  • Thank you tahirtear, titosantanov , and ornageflower for taking the time to reply to my post. I appreciate it immensely! I was overwhelmed that complete strangers would take the time to impart their knowledge, advice and submit recommendations to a complete stranger. It is a stark contrast to the care that is bestowed upon me by my GP / Health care professionals from all sectors of the industry.

    Please find elaborations on points/ questions raised:

    Tahirtear:

    I will endeavour to do some research on specialist. I had already started composing a list. To be honest I did not even know there was a field of expertise in pelvic Neurology, so I will definitely look in to that subject. Thank you, dually noted. I will google the DR you recommended.

    Titosantanov:

    I live in London, England.

    Orangeflower:

    I did not know about this particular method in changing GP’s, nor did I know that the website allowed you to submit a search for GP’s who specialised in a certain subject. And if I am completely honest, I did not know that GP’s did specialise in certain subjects, I thought that they had a broad knowledge on all subjects as a GP.

    Many thanks!!!!!!

  • Hi there are very few specialists for this condition in the UK unfortunately· However I believe there's a dr in Harley street, one in Manchester and a partnership in Bristol· I have seen the ones in Bristol and consequently had decompression surgery· If you want any more information I m more than happy to help·

    Good luck and stay strong there is help out there

  • Hello my name Is Julia. I have been suffering with PN for two and a half years. It came on following a bad bout of cystitis. I have had a history of constipation since I was a child and reading other posts there seems to be a link. I was taking gabapentin for 7 months (from March to December last year). Although only on 300 mg / day (occasionally 600 mg) I found this drug very sedative and gave me a rigid jaw. I also started to develop gum problems with lots of bleeding. I discovered that gabapentin dries out the mouth which can cause gum disease. I came off the medication at Xmas and it was pretty bad cold turkey for ten days. It worried me seeing other posts and how much gabapentin people are on.. Since having this PN I have tried many therapies, firstly acupuncture, cranio osteopathy, cranio sacral therapy and physio. I have to say the physio has been the most helpful. I saw someone who specialises in pelvic floor. She did internal as well as external work. She advised that there were bands inside my vagina that were tight and externally, fascia stuck together. She explained that it was likely following the UTI my muscles got into a cycle of spasm. I also saw a PT that also specialises in this area in Harley Street. She could feel the heat / inflammation in the perineum. She said there is a link to jaw issues and the pelvis which I have since researched on the web and found other people querying this link. Her recommendation was a combination of physio, daily exercises, meditation, diet, anxiety reducing life style. I am starting with the phsyio again next week as my PN has really flared up over the last few weeks. I find it very detrimental to my life and isolating. I don't often feel like going out. I do work in an office but luckily I was provided with a stand up work station and a gym ball for sitting on when I need to sit. That helps. My best time of the day is first thing in the morning when I wake up as generally I have no pain. Usually by 9.30 am it starts and by the evening I am pretty miserable with it. I place an ice pack on my genital area and combine this with a hot water bottle which seems to provide some relief. I wanted to write this post in case anything I have said resonates with anyone or as a suggestion for people to try physio, Final note, it's important the physiotherapist understands PN and knows that the muscles and tightness needs releasing NOT tightening. Good luck to anyone reading this who is also suffering this horrible condition. Julia.

  • Hi Julia·

    I find I get some relief when I use my local pool which is very quiet , I can swim gently using a float and I do gentle exercises the s surgeon taught me in the water· In the water is the only time I am pain free and its wonderful to feel weightless and normal!! I had bilateral nerve compression surgery 10 weeks ago in the UK under the care of Mr Gareth Greendale and Mr Chris Wong, both were fantastic·

    Good luck with managing pain and hopefully recovery

  • Thanks Poppy. I will try this. Good luck too.

  • In response to harmonyserenity there are sadly few specialists in the UK for this condition, however I believe there is a dr in Harley street, one in Manchester and a partnership in Bristol· I have recently had bilateral nerve decompression surgery as a result of seeing specialists in Bristol and happy to answer any questions

    Good luck and stay strong there is help out there

  • Hi yes with regard to the GP you don't have to give a reason for changing or indeed even tell your GP you are moving. Yes they are all general GPs but if you research your nearby ones you'll probably see that there is one specialising in 'women's health' or 'gyneacology', you can also see on the NHS Choices website recommendations people have made about that GP Practice.

    Then, it's simple, you just go in pick up a form and register with the new GP. Your notes will get transferred across which does take some time but you can still see the GP in the meantime.

    I would do that and then follow up some of the recommendations the other posters have mentioned for specialists and ask the new GP to refer you. Good luck x

    PS If asked just say you are looking for a GP specialising in your area of need rather than say you dodn't like the old GP.

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