Hi - have very extensive adhesions, following multiple surgeries, and Ovarian Remnant Syndrome. Need advice on pain relief

[housebythesea]

My pain issue is that my GP seems to be incredibly reluctant to prescribe any opiate-based pain relief, and is constantly on at me about the risk of addiction and trying to get me to reduce my usage, at one point reducing my prescription by 75% and leaving me virtually suicidal with the pain. Yet I have never ever overused pain relief, or asked for a prescription early, and take only the minimum dose I can get away with. I have required pain relief for over 10 years and will probably require it indefinitely. I have had multiple surgeries. He wants me to use more anti-inflammatories, and I am trying, but they give me such bad gastric pain, even with a PPI, that I feel I am just swapping one pain for another. My research suggests that supervised use of mild opiates is rarely a problem, and that it's the unsupervised use of recreational opiates which leads to addiction. I went to see him this week as, although I can just about manage the pain during the day, the pain at night is so severe, I wake up literally screaming. This means I start the day exhausted, and my first painkillers of the day just make me feel sleepy. His suggestion was to just have paracetamol in the morning. I was actually hysterical with laughter by that stage. He is prescribing me co-codamol 30/500, so I don't consider that an enormous dose, tbh. He will only give me 100 tablets per month, so I have to wait until I am in agony before I take them, otherwise they simply will not last.

There is no doubt about my diagnosis - it is all confirmed with MRI and via multiple surgeries- I have Ovarian Remnant Syndrome, with a cyst adherent to bladder, bowel, side wall, abdominal wall, uterus and ureter, with extensive scar tissue extending into all organs. My surgeon said I had the worst adhesions he had ever seen.

How do I deal with my GP? I don't want him to give me something massively strong - I still need to go to work every day. I just want him to add in something stronger at night so that I can get some relief and to save the neighbours being woken up by my screaming in my sleep. And I would like not to have to ration my tablets, so that I have to make 12 days worth last a whole month. I am getting to the stage where I am absolutely desperate. I have tried a couple of treatments for neuropathic pain, but found I had little relief, and I couldn't tolerate Lyrica at all, the headache was totally debilitating. Would co-codamol 30/500, 2 tablets four times a day, plus something additional at night, seem a massive dose to anyone else? I am far from stupid, I have a life sciences degree and understand my condition very well, but have no idea how to deal with this intransigence, and am not convinced that his concern is well-founded.

As a quick rundown, I have had multiple surgeries including a salpingo-oophorectomy for ruptured cysts, endo, pelvic abscess, peritonitis, ureteral compression, division of adhesions etc. I have a diagnosed cyst secondary to ovarian remnant syndrome and it hurts like you wouldn't believe. My CRP topped out at over 300 and has never returned to normal, hovering permanently around 45, so I clearly have a lot of inflammation.

Any ideas, thoughts, suggestions, recipes and Xmas gift suggestions for a teenage nephew gratefully received.

[Orangeflower]

Hi I understand where you're coming from as I also have adhesions from multiple surgeries- the last one they took 6 hrs trying to get rid of them and the surgeon said there were dense adhesions. Suprisingly, since that op I have felt much better which goes against everything I've read as they're supposed to come back...

For pain relief in the past I found Amitryptilline helpful have you tried that? Mine were bowel ops and they wouldn't recommend me opiates or anti-inflammatories either.

Sounds like you need to try to get a referral to a pain clinic would the GP do that do you think? Take care, it is awful the problems adhesions cause x

[housebythesea]

Hi, thanks so much for your reply.

Yes, sounds as if your situation is similar to mine. The last two procedures were jointly undertaken by the gynaecologist and the bowel surgeon, as I had so much bowel involvement. Strangely, even with the bowel involvement I have found opiates the easiest to tolerate. I tried Amitryptilline but it wasn't ideal as it was so sedating. I have had a previous referral to a pain clinic but have moved since then and this one seems very reluctant. Plus, the waiting list is horrendous. I have printed off some evidence showing that addiction to opiate based painkillers is very rare when used to treat pain, as that seems to be his major gripe. My consultant is marvelous, so I shall enlist his help, I just feel it is not being taken seriously - they would rather I wasn't taking any pain relief at all, and for the life of me, I do not understand why. It just makes me feel as if he doesn't believe me. If he did believe me, why would he be constantly on at me to reduce the dose? I have accepted that I am never going to be pain free - I can cope with that. But it has to be manageable and I have no unrealistic expectations; surely waking the house up every night can't be acceptable.

I'll speak to him again about the pain clinic, though, that's a good idea

Thanks again x

[Orangeflower]

Hi again yes the Amitryptilline is very sedating however it does get a lot better with time. i have heard of one called Nortryptilline which is meant to be less sedating maybe that would be worth a try?

I joined something called Benenden Health as it is for those with pre-existing conditions. the idea is that it complements the NHS- so for example if there are longer waiting lists than 4 weeks they can speed that up for you. It is not expensive, but you ned to be with them for 6 months before using it, and the services are discretionary. I haven't used it yet though. I just wondered if it may be helpful for your referral to the pain clinic.

Do you think they would ever do further surgery for the cyst and remnant? Can they remove them perhaps?

[housebythesea in reply to Orangeflower]

Hi, that's a good idea, I will look into that. I have Bupa insurance, but the last time I tried I was told it wouldn't speed up the referral to a pain clinic, which rather makes me wonder what the point is of having it.

In terms of further surgery, I have been here so many times before, with varying degrees of success, that I am reluctant to go down that road again. In terms of a risk/benefit ratio, I am not even sure it's advisable. The cyst I currently have is adherent to the ureter, bladder, bowel, uterus, pelvic side wall, abdominal wall etc - so I think the risks of removal, or adhesiolysis, may outweigh the potential benefits. Having had one procedure go disastrously wrong in the past, I am not hugely keen to take that risk again. I don't let it get me down usually, I am just frustrated by what appears to be the sole aim at the moment - ignore the fact that I am being driven demented by the pain, and get me off the tablets at all costs

[paulyne in reply to Orangeflower]

Unfortunately Benenden hospital caused my pudendal nerve entrapment. I woke up from surgery in agony and the surgeon refused to believe I had a problem. I went back 4 times and they treated me as if I was a liar. Because of this it took me years to get help. Benenden are fine if your treatment goes well but don't want to know if you've a problem, so I definitely wouldn't recommend them.

[bexCollins]

Hi

I too have had adhesions. In fact had surgery just last month to release adhesions that had been causing me pain. The adhesions from the last big surgery were not as extensive as my surgery before, where it took over 4 hours to release them. Adhesions do cause pain. And sometimes surgery to release them can make things worse - although I have had experience of release of adhesions leading to a dramatic reduction of pain. In fact I had been pain free from the adhesiolysis before last up until I had a laparotomy for a ruptured ovarian cyst and had complications afterwards.

If you are not happy with your GP's advice you are perfectly within your rights to seek a second opinion and ask to be reviewed by someone else. I would ask if you have been reviewed by a Pain Management Team. If not, I would personally be seeking out a request - because they are the specialists in this field.

These would be my suggestions to you. I know how horrid if it to be in persistent pain. I have had a gruelling last year and hoping my recent surgery has improved things, but only time will tell.

Good Luck

[housebythesea in reply to bexCollins]

Hi, thanks for your reply too.

I am struck by how similar our experiences are, all of us.

I have gone down the surgical route in the past as one just becomes desperate for any improvement, and what alternatives are there? It has previously got to the stage where I had no choice because I had such extensive bowel involvement, and the surgery certainly improved that a great deal, but after the last 5 hour procedure, I swore I would not go down that route again unless it was a matter of life and death.

I am so sorry to go on at such length, it's just been a really really bad week

I hope your recent surgery proves to have been of benefit, take care and good luck

[bexCollins]

I can totally empathise with you. It is such a difficult position to be in and it certainly isn't easy by any stretch of the imagination. I have had times where I have done nothing but break down and cry at the frustration and anger I have felt. I still don't know what the success will be as I have some degree of nerve damage due to the past laparotomy and that means the nerve fires pain signals unecessarily down front of my leg and into my hip. Its like having sciatica, but at the front. Since a steroid injection and new medication, it has been much improved.

Surgery is a big step, and due to the density of your adhesions, sounds like it would be very very complicated if it were undertaken.

You are not going on. You can use this as a space to share your concern, with people that in their own way, have some understanding of what its like to be feel frustrated, angry, sad, despondent, and trapped in this pain.

Hugs (if that's ok)

[housebythesea in reply to bexCollins]

Thank you, it is really helping to sound off a bit, tbh. I think I frightened myself witless this week with one exceptionally severe bout of pain in the middle of the night, where I was really quite uncertain what to do. I suppose, if I am honest, I was actually scared. At the moment, I am perimenopausal, and every time I cycle, I appear to be developing cysts - there certainly is a cyst reported on MRI which is sticking to everything. The cyst wasn't there at my last surgery two years ago, but did cause ureteral compression last year, for which I had surgery - so add urinary tract problems to the list My gynae has explained that when these follicular cysts form, because the remnant is buried in adhesions, there is nowhere for it to go, so rather like a boil which is ''trapped'' under the skin, it becomes intensely painful. What you describe about the neuropathic pain you experience also strikes a big chord with me - I am sure there is a significant nerve component to mine - but although I really tried, I just could not tolerate Lyrica. Ironically, I believe I can manage my pain perfectly well with co-codamol and a small, 5ml dose of oramorph at night - but my GP won't prescribe it, and limits the amount of co-codamol he will give me, because he worries about the risk of addiction. My angle is that this concern is not supported by data - the data says the opposite. I also would have thought that the fact that I experienced no difficulty stopping the pain relief when I did experience brief periods pain free after surgery should reassure him. Ironically, a previous GP warned that in her opinion I have a high pain threshold and may not appreciate the magnitude of my own symptoms - this because I was really very ill after one operation, yet thought I had a UTI and was drinking cranberry juice and trying to sweat it out. I actually had a pelvic abscess and peritonitis, and it was remarked on then. So now I worry if the pain becomes truly severe, as it did this week. I don't feel unwell, however, just knackered beyond belief. I have also had to take some time off work for the first time in a year, which I am really hacked off about. I have had ten years of this as pretty much a constant, and 15 years at least before that with it undiagnosed and the cause of repeated hospital admissions, but this is actually the first time I have let it get me down. I just started Prostap injections, so that is probably why - and also probably why the pain is so much worse. So thanks for letting me sound off, it really has helped x

[Orangeflower]

Hi there yes surgery scares me too - my last op was an emergency and has to have a metre of small bowel removed (as it was ishaemic- think this means lacked blood supply) and twisted with adhesions- that was when they cut out the other adhesions too (I think).. I had also had peritonitis prior to this and think it might be one of the reasons why the adhesions were so bad.. anyway you're not 'going on' not many people seem to understand this unless have been through it too..

It doesn't sound like your meds are too high, am suprised at the GP...do you have another GP in the practice you could see or maybe change practice? It's easy to do you don't even need to tell the GP just fill in a form at the new one...also wondered if the Mirena might help, it stops or reduces your cycle so maybe would help with the cysts? Just a thought. xx

[housebythesea in reply to Orangeflower]

Hiya, thanks for your reply

Gosh, poor you

I had never understood that the bowel could be so compromised until it happened to me, so I can absolutely sympathise.

I was somewhat fortunate in that I started to have episodes of bleeding from the bowel, had a colonoscopy which showed I had a large section of bowel which had become twisted and severely narrowed, so at least my surgery was done in a planned way before it actually became ischaemic. My peritonitis followed an earlier salpingo-oophorectomy and the suspicion has always been that the bowel was 'nicked' at the time and not noticed. That is one thing that has improved markedly since my last surgery - although my pelvic pain is as bad as ever, my bowel function improved beyond all measure, so I do hope you are as lucky as me in that respect. I have enormous respect for my surgeon who said it was like trying to strip fragile, wet wallpaper from a wall, but in one intact sheet! I am amazed how skilled they are. I even regained the weight I had lost - so yeah, cheers, thanks for that! The one thing that I could have done without

As regards my GP, I think I may have to consider changing - not something I want to do as I have huge respect for him otherwise, and he is very knowledgeable, but we really cannot agree on this.

Interesting you mention Mirena - have discussed this with my Gynae, but he doesn't feel I am a good candidate for it and neither do I, for a number of reasons. I had Zoladex for several years before it stopped really delivering any benefit, so now we are trying again with Prostap this time, just to make it easier for me as I can do the injections myself.

I must say I am so glad I found this place - I actually read about it in a comment on a news item on the Daily Mail website, where I had vented my spleen at a number of idiots commenting on a news item about a young woman with adhesions. I'd really like to thank all of you for your replies. You can't imagine how much it is helping me, not least because I now know there are other people out there who have experienced the same things I have, and up til now it's been a bit of a lonely place to be. x

[bexCollins]

Here is a place you can be honest and open. We canempathise in our own ways.

[JudyRentz]

I had same dr. Reactions through my 8 years of pudendal nightmare! Until I found the pelvic specialist I needed,saved my life.When it comes to feeling suicidal,choose the hard drugs.you must find the right dr.gp s don't know pain like this,and most won't learn! I've been given Everthing! Really,narcotics barely touch the pain.but,I've been assured by my trusted drs. That taking them as prescribed will not hook you,especially if you're worried about becoming an addict! At least you don't die of pain! Stay away from amitrypteline ,you will become HUGE,same with Lyrica and cymbalta! I use Paxil,with no side effects.If you are as ill as we are,one needs it! Skelaxin has helped ease my spasms so much,however,only on days I don't have to be up and. Not in the attack stage. In mild days,I can ward off an attack with clonazepam and 800 IB,but there are few days like that now.My drs. Say I must stay on Gabepentin ,600 through the day?Thank God,I'm headed to Minnesota this Monday for surgery,very rare but my last resort. This disease is the most horrible thing I've had to bear,and I have had many! I know pain and I feel for you.You must get to the right dr! Judy R

[housebythesea in reply to JudyRentz]

Hi Judy, thanks for your reply.

I will look up those drugs as no doubt I will know them under different names. I think the pain I find most difficult to deal with is not the low level 'background' pain, as I describe it, which is always there and which seems to be easier to manage, but the acute stabbing spasmodic pains which really don't seem to be particularly improved by anything and which mean I am experiencing exceptionally poor quality sleep at the moment. I have considered asking my GP if it is feasible to add in a sleeping tablet at night, rather than increasing the pain relief any further, as I am sure I would be able to deal with this all a lot better if I wasn't so damned tired all the time. Have you any experience of this?

I will be thinking of you as you have your surgery today and wishing you all the very best. Fingers crossed x

[JudyRentz in reply to housebythesea]

Many drugs have rebound effects and cause insomnia.I keep a list. Trazedone is awesome 300 Mgs for me.SOOOsafe,given to children.Lesser doses will not work! Take as you get to bed,works very quickly! See my sad story now on Facebook ,titled pudendal pain. Thanks for prayer! Leaving shortly. Judy Rentz

[Orangeflower]

Hi again, it's good to speak to others as not that usual to bump into others in real life who are going through this. Could you maybe see another GP in the practice about the pain issue but then keep seeing the original one for other stuff? Aluso the pain sounds worrying, you were saying the levels of inflammation were still raised, have they done any other bloods such as a full blood count, which could show if there was a raised white blood cell count or any infection present. I say this as I also had a pelvic abscess after surgery but no-one did any tests for it. I wonder if they would be able to drain the cyst without doing surgery if it's causing such problems.

[JudyRentz]

All who are interested,go to my nightmare of pudendal pain,and just yesterday had surgery with Dr Stanley Anlolak.Only four in the world. Sjantolakataol.comhe is an awesome fellow .heonly does these surgeries.It won't be instant,but GOd will heal meJudy. You can see you YouTube,pudendal neuropathy.Drs can't help drugs do little! Judy rentz

[angelT007]

Hi all, I have just come across this site and seen your post's. I just just wondering and hoping that anyone on here could tell me all the symptoms that they are experiencing. I had total hysterectomy 3 years ago due to abnormal bleeding. Prior to that, I had 2 C-sections and a laparoscopy so am aware that I already have scar adhesions before hysterectomy. But I have the worse pain ever which is mainly left side and all around back. I cant lay, sit or stand as the pain is too intense. I have blood in urine and burning. Also have bowel problems. I don't have infection or a bowel obstruction. Also no mass was seen on ultrasound so they are saying that it cant be remnants. The gyni that I saw was not helpful and said its probably my spine! Has anyone else been given the run around? Or experienced non diagnoses?