Please help I am desperate!!! Had a f... - Pelvic Pain Suppo...
Please help I am desperate!!! Had a full hysterectomy 5 months ago and been in chronic pelvic pain ever since!! I feel my life is over!!!
Hi Poppy,
Who have you seen about this ? gynaecologist, a pain specialist ? have you got a copy of the surgical report which could shed some light on this ?
I have seen 2 gynocologist a pain specialist and about to see 2 neurologists. My GP and specialist have suggested either my nerves have severed during hysterectomy or pudental nerve entrapment. I am at my wits end as pain so chronic I am virtually bed bound. I a 41 yr old mum who can no longer play with my 7th son and in grave danger of losing my much loved teaching job and head of faculty! I have been in for keyhole surgery 25th nov but not sure if this the correct route? Thanks
I also lost my much loved teaching job due to a similar cause so I really sympathize with you. Do you mean you are due to have surgery on 25th Nov ? who is doing the surgery and what is he/she intending to do ? has anyone suggested that a nerve(s) may have been stitched - is anything mentioned in the surgical report ?
Apparently I have a 1.5 cm cyst in my left ovary that was supposedly removed 6 yrs ago, can this be a mistake?
Did you have that surgery due to endometriosis ? if so this could well be possible : ovarian remnant syndrome.
Yes I had endometriosis and suffered for yrs even starting IVF! It's strange have one document stating my left ovary was removed 6 yrs ago and another from this July stating it is still there and contains a cyst measuring 1.5Cm? Gosh this is a mine field!! Surprisingly having a good day today have been able to sit upright without shooting pains for an hr, haven't managed that for months? Could I be recovering naturally or is that not possible ?
I'd guess this is an ovarian remnant. Did you have 7 children by IVF ? Neuropathic pain can be intermittent as well as constant.
No I only have one son aged 7 yrs and although I started IVF as was told I only had a 1% chance at best of natural conception I proved drs wrong and conceived naturally ! Pain less acute today have been having alternative therapy Amatsu so maybe it's helping? Aching now but amazed I was able to sit upright for a whole hr? Having a nerve block next week and been told specialist can diagnose PNE after one block then book me in for surgery? Seems a little precarious to me and his confidence grew when he asked if I had private medical insurance? Am I bring too cynical?
Thank you I share your sentiments and I am very cautious to say the least the confidence and complacency of the medical profession can be breath taking !! I know this is going to be a long journey just wish I could trust someone medically that seems to care and support what so many woman are going through and having to make drastic life changing decisions !!
I had two nerve blocks last night right and left side, feel bit fragile this am as needles were in for over an hr trying to reach the nerve ouch !! Still in bed at the mo as can't feel my right leg all NBA but think there is a slight difference in pelvic pain not life changing but less sharp? Is this normal? Thanks hope you are ok?
I have suffered horribly for 8years.First you MUST find a pudendal specialist who does internal injections,WHILE asleep!demand this! TWO failed treatments are a sure fact that you have pudendal entrapment.I am headin toMinneapolis in Dec. for surgery.Its my last option! Dr.Stanley Antolak has a pain center there nd is so sweet to respond.He dropped his previous practice to learn and be able to help us in terrible condition.I don't know your location,but few will do the internal blocks.They saved my lifeI There a few specialists! ANtolak phone....463 7677118, 7635376000. You don't have to suffer,there is help now and this only gets worse! Good luck. Judy r
Thank you for your response it is heart ache this forum to hear of so many woman that have suffered such chronic life changing pain for so long! I am 5 months in and have had a provisional diagnosis of PNE this am pending nerves blocks that are going to be given next week during a CT scan and will be fully awake? If this offers some release then decompression surgery. Thankfully I think through sheer bloody minded ness and extensive research I have found someone that specialises in this surgery? I am based in wales in the uk so geographical a far distance from yourself. I glad you are getting help after 8 yrs you truly deserve some answers and your life back!!! Good luck x
Hi hope you are ok? Had two nerve blocks in either side last night to locate pudental nerve, was awake with needles in me being adjusted for over an hr, very painful! Pelvic pain slightly less sharp but difficult to tell as everything feels so nb is this normal and what should I accept to feel to move forward with a diagnosis? Thanks
You should never indure this kind of pain.You are the patient and can demand anesthesia! Are you in the UK? The numbing usually disappears in one or two days for me.The tingling for me is when the feeling is coming back.And you already or still have pelvic pain? You must find a DR. Who does internal injections,called trigger points! I can't imagine how this procedure helps at all! Any nerve block I've had usually fades quickly. A university Dr. Sneaked an intern in and punched many times when the theory. Was back trouble.Im so sorry you had to endure this!
Thanks for your response yep was completely unprepared for such an invasive procedure and had to endure at least an hr under ct scan twisting and altering position of both needles, body convulsing by the end. Sadly after numbness last nite pain has intensified today and fear it may have caused a flare up? Is this a sign that maybe pudental nerve is not the cause as that is what the blocks were for however not sure if they were definitely pin pointed? I am uk based and now due to have gyny surgery 25 th nov to explore adhesion route? Feel very sore, lost and confused! Hope you are ok and not in too much pain ?
Poppy, two failed nerve blocks to relieve pudendal nerve pain s one of the criteria for more pudendal work. Is your adhesion surgery going to laporiscopic? Adhesions may have entwined the pudendal.I highly recommend that you go to sjantolak@aol.com. He learned the surgical procedure from a dr. In France.You may be able to find a surgeon in UK when you prowl the links pertaining.Im feeling so sad that you suffer and are your drs.really sure what your problem truly is. Many attempts ,from many drs. Guessing in my case to what my illness was? God bless and keep you tonight with bearable pain. Judy
Thank you and you! My surgery is key hole surgery and to be honest no one really seems to know what to do with me just in agreement I am in a state and in chronic pain. Feel very sad and confused and breaks my heart I can no longer play with my 7 yr old son he is growing up before my eyes and I feel we are both missing out! X
I thought nerve blocks should help relieve the pain if it was pudental nerve, my bilateral blocks have only served to increase the pain, wish I could have some answers? X
I guess I just lost the long comment. Have you searched the info I sent.I will try to find the Dr in France and maybe some leads will appear. You sound like I have. Gaurd your mental state. The thought that there is no help is overpowering! I know exactly what you're going through! You must have something for the pain.I was so afraid of it,but,I was in agony. When some relief came,I weaned myself off! I am guessing your blocks were not done vaginally to the hot spots.This is a must. Sometimes my pudendal spec. Would do as many as 60 , while I was UNDER! You could not live through these while awake! You must find such a dr. If you are stil in pain,you will have to seek surgery,the only thing left! Between pain meds,I manage with 800 IB and clonazepam for spasms. It's true so manyDRs. Don't believe the pain! Press on! Judy
Thank you I refuse to give up but confess to dark thoughts and constant pain as you know is heart ache. I will endeavour to research and found someone that càn help!! Is your pain worse when sitting and feels like broken glass beneath your skin with sharp electric type shock pains? Have tried loads of meds but to date no joy just make me sick and tried all the time? X
I haven't seen any reports to date but have now requested them. Richard penketh and Nigel davies (cardiff squire) are performing surgery to cut adhesions away? Nigel performed the original hysterectomy so apprehensive to say the least! How long have you been suffering for , have you lost your job is off on ill health? Didn't realise nerves could be stitched during surgery, this really is a very complex journey with seemingly few answers.
Are nerves stitched deliberately during a hysterectomy or is it an accident? Been suggested by Richard penketh that nerves may have been severed during hysterectomy? What is your experience, how long have you been suffering for and have you been given any answers?
This would not be intentional but everything is so close in the pelvic and there are numerous nerves and blood vessels. This complex anatomy doesn't receive the attention required in my view. It has been a very long road, for many years my pain was intermittent and cyclical, then it became constant for years , I was lying down 24/7. Eventually went abroad and got some answers there.
Did you to go to the clinic in nante? Did it help at all?
Yes, it helped a great deal
Do you know the most effective way to diagnose pudental nerve entrapment?
It's not easy to diagnose. We have a leaflet on this subject which is evidence based. If you want to know more e-mail info@pelvicpain.org.uk : thats' us PPSN
Thank you for your response and I am sorry things have been so difficult for you. Are you any closer to being pain free or teaching again? I am seeing two neurologists next week prior to surgery and wondered if there were any nerve related tests they could perform prior to surgery? Thanks
I reluctantly retired early : ill health. Have sent a private message. There are no reliable nerve related tests. EMG's often don't detect any problem/abnormality.
Thank you not sure how to access private message all new to me. So sorry to learn you had to give up teaching must be devastating .
Click on the blue lettering of the person you want to contact and type your message in the box, then press send. When you receive a private message a number appears on the green toolbar at the top, if you click on that it opens the message.
Thank you for sharing your experience I have only been in chronic pain for 5 months but starting to have really dark thoughts as I feel I am losing everything dear to me. You are an inspiration though and given me some hope. Glad you have some quality of life back
Still have not seen hysterectomy report asked again this am and apparently not available? Saw MRI scan that revealed post hysterectomy I have sub centimeter cysts in both my ovaries that contain methaemoglobin and are likely to be haemorrhaging?? This came as quite a shock as I had key hole surgery 6 yrs ago to remove my left ovary and Fallopian tube? Does this make any sense to you in your experience? Thanks x
Poppy,hope you got my last email.My life ended and I have been Bedfast mostly always.Goto sjantolak@aol.com. And see Glasgow.Its a must see to understand damage and surgery!judyr
Can I suggest you look up adhesions as they are the unseen cause of pain in so many people. I am in a support group for them and have had a few surgeries to deal with them the last involved a hysterectomy twelve weeks ago and the pain is already returning for me.
I'm sorry you are going through this aswell! It's life changing isn't it but not in a good way! It has been suggested that adhesionsay be the cause and I am having further surgery 25th nov. I seem to be experiencing classic symptoms of pudental nerve entrapment as I can no longer sit upright and have excruciating electric type shooting pains? Really confused and don't know which way to turn? I have heard that further surgery can cause more adhesions? Maybe that has happened with you?
I have had adhesiolysis before (separation of adhesions) and found that I have had no further problems up until my last big surgery. So I went from 16 through to 28 with no problems with any further adhesion related complications. Although the surgery was over 4 hours long, he did a great job and even used a seaweed based barrier to prevent the build up of further adhesions. I know doctors are often reluctant to go in and deal with adhesions, unless there is a bowel or ovarian obstruction/torsion, but being in constant pain is awful, and in my opinion, reason enough to go in and deal with things. i was told that there can be nerves trapped within adhesions. Are you on any neuropathic medications? How do you find them? I would suggest asking the doctors whether they use any barriers to prevent further adhesions.
I hope you get some answers.
I agree it is always wise to ask the surgeon about whether they use adhesion barriers and also what type and what studies have been carried out with it. Interested to hear about a seaweed based barrier. Do you know the name of it ?
Hi Judy hope you are having a good day. I had a bit of a break through yesterday Mr Wong Bristol/cardiff squire contacted me to bring our app forward and when I gave him a brief synopsis of symptoms and pain he felt he could be PNE. I am not putting all my eggs into one basket but it was the first time in 5 months I fleet the someone in the medical professional be able to help as to date "I've been a puzzle!!! " keeping everything crossed. Thanks hope you are well. Are there any questions I need to ask him regarding PNE on sat that may help. Have put together a dossier of my medical history to help.
No doubt he'll give you his opinion and you should get a letter outlining this after the consultation. I would ask if it is possible establish whether there are stitches affecting a nerve(s) before you have any surgery ? I would also ask what he suggests if a nerve(s) have been severed as I'm not sure that any surgery would be helpful in this case. Hopefully you have got a copy of the surgical report to take with you ? It's a good idea to familiarize yourself with the content of the correspondence but make sure you keep copies of it too. If he suggests surgery, I'd ask how many procedures of that type he has done and what the outcomnes are.
Saw consultant today and a provisionally diagnosis of PNE has been made based on symptoms , history and medication tried unsuccessfully. Also had to endure an invasive rectol examination and when he pressed a specific area I had acute pain and electric shocks. I having a nerve block in Bristol next week as part of a CT scan. If that gives me instant relief then the prospect of surgery. The consultant is Mr Wong Bristol squire, have you heard of him he is Mr Greenslade partner and both have trained in the clinic in nante? Thanks hope you are ok and pain free today
Thank you for your response and really given me hope for the 25th nov. I will keep you posted hope you start to improve
Hi
I think it is always important to go into surgery as well informed as possible and to have had the chance to ask the questions. Will you have a pre op assessment? This can be a good time to ask questions.
PPSN - I am not sure I was given a name at the time, just that it was derived from seaweed.
Thank you I will have a chance to speak to consultant prior to surgery the following week. I have so many questions and very apprehensive however in some much pain and unable to leave my house I am grateful for anything! Hope you get some joy when is your surgery?
I had similar problems after a hysterectomy 3 decades ago. My consultant excised the scar a year later but it did not relieve the pain. Sometimes I would even feel faint because of it. after a barrage of tests could not reveal the cause I was referred for alternative treatment, acupuncture. But I felt worse and worse after each treatment and finally could not get up off the couch. That was the end of that. I tried surviving using Voltarol suppositories and started having stomach problems. Then one morning I was doubled up in pain and could not get up, and was fed back into the NHS system again. Pain killers left me suffering in between doses, so I bought a Tens machine that enabled me to keep working and even went to India wearing it. BUT a physiotherapist managed to ease the problem, then eradicated it. So DO NOT GIVE UP HOPE. But I cannot take anti-inflammatories at all; they make me vomit but I could live a normal life again.
