Doctors Appointment Yesterday
phoenixoncemore
Posts: 196 Member
I saw the specialist yesterday. As I expected it was very short, I didn't get a chance to ask any questions really. The Doctor I saw was very efficient and business-like. I suppose as we don't conclusively know what it is yet then questions are to be saved for a later date.
We went through my symptoms, medical history, allergies etc while she jotted down my responses to her fired out questions quickly on her forms.
She then did an examination. That was not as painful as my last lot of swabs with the nurse (thankfully) but still not good. We then went back to the other room where she jotted some more things down and said she couldn't get much information from the exam as I was too tender, although what she didn't feel anything abnormal, and she'd need to put me on the waiting list for a laparoscopy so they could see inside without me being awake. She then dictated the quickest referral I've ever heard, and I heard her say "uterus is immobile" I thought this was strange - is it supposed to be moving about in there?
I googled this when I got home, turns out yes it should be moving around in there. And the most common reasons for them being immobile are adhesions from endometriosis, inflammation from Crohns disease (no wonder she spent so long asking about my fathers family history of that) or scarring. I've already been to a Gastro Specialist about possible Crohns and he thought that to be very unlikely so hopefully it's not that.
Apparently the waiting time for a laparoscopy is around 10 weeks at the moment, which I was amazed at, it was nearly that long to get this specialist appointment. I had the pre-op done, swabs raping my throat and nostrils. Unpleasant but not painful. Now I just have to not come into contact with any MRSA or other nasties in the next 10 weeks or so.... crazy!
I've never had any operations or general anaesthetic before so I'm now going to work myself up about that I expect. I know my Mum has the hysterical crying reaction to anaesthetic so looking forward to that
I think because I've heard this sort of thing for so long I was then thinking: "Am I sure it's really that bad to go through with an op?" Maybe I am just being over-dramatic, I mean, I could have maybe put up with more pain during the exam, although I didn't tell her to stop I guess she just could tell my reaction. I've had fillings with no pain relief before with my dentist asking me for "just 5 more seconds of the drill" it caned but I did it, maybe I could have managed that way? What if they do this op and find nothing? What if they do this op and find something worse than endometriosis? ( love that that came into my head after the 'what if they find I'm normal' question, I am messed up :ohwell: )
My back is still smarting from the exam. I'm taking the low strength co-dydramols as I don't really want to zombify myself today with the beast-like codeine. Plus I should be due for an actual attack any day now so I don't want to be on it for too many days in a row in case it gives me a stonking headache to boot, although I may give in when I get home from work later if it's still bad. So many things to think about.
So that's where I'm at right now. Sorry for the vent, and for feeling so sorry for myself, it's just good to get it out there. Any tips, re-assurances and empathy for all you ladies in the know are greatly appreciated though. :flowerforyou:
We went through my symptoms, medical history, allergies etc while she jotted down my responses to her fired out questions quickly on her forms.
She then did an examination. That was not as painful as my last lot of swabs with the nurse (thankfully) but still not good. We then went back to the other room where she jotted some more things down and said she couldn't get much information from the exam as I was too tender, although what she didn't feel anything abnormal, and she'd need to put me on the waiting list for a laparoscopy so they could see inside without me being awake. She then dictated the quickest referral I've ever heard, and I heard her say "uterus is immobile" I thought this was strange - is it supposed to be moving about in there?
I googled this when I got home, turns out yes it should be moving around in there. And the most common reasons for them being immobile are adhesions from endometriosis, inflammation from Crohns disease (no wonder she spent so long asking about my fathers family history of that) or scarring. I've already been to a Gastro Specialist about possible Crohns and he thought that to be very unlikely so hopefully it's not that.
Apparently the waiting time for a laparoscopy is around 10 weeks at the moment, which I was amazed at, it was nearly that long to get this specialist appointment. I had the pre-op done, swabs raping my throat and nostrils. Unpleasant but not painful. Now I just have to not come into contact with any MRSA or other nasties in the next 10 weeks or so.... crazy!
I've never had any operations or general anaesthetic before so I'm now going to work myself up about that I expect. I know my Mum has the hysterical crying reaction to anaesthetic so looking forward to that
I think because I've heard this sort of thing for so long I was then thinking: "Am I sure it's really that bad to go through with an op?" Maybe I am just being over-dramatic, I mean, I could have maybe put up with more pain during the exam, although I didn't tell her to stop I guess she just could tell my reaction. I've had fillings with no pain relief before with my dentist asking me for "just 5 more seconds of the drill" it caned but I did it, maybe I could have managed that way? What if they do this op and find nothing? What if they do this op and find something worse than endometriosis? ( love that that came into my head after the 'what if they find I'm normal' question, I am messed up :ohwell: )
My back is still smarting from the exam. I'm taking the low strength co-dydramols as I don't really want to zombify myself today with the beast-like codeine. Plus I should be due for an actual attack any day now so I don't want to be on it for too many days in a row in case it gives me a stonking headache to boot, although I may give in when I get home from work later if it's still bad. So many things to think about.
So that's where I'm at right now. Sorry for the vent, and for feeling so sorry for myself, it's just good to get it out there. Any tips, re-assurances and empathy for all you ladies in the know are greatly appreciated though. :flowerforyou:
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Replies
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Everything is going to go smoothly. I did the same thing with looking up things on Google and it will make you crazy. I have had 3 laprascopic procedures and I was terrified the first one. But I found out that it all depends on the doctor you have do the procedure. The younger you are the faster the healing process is. I can say that you are probably experiencing IBS- irritable bowel syndrome.
I also experienced the several back pain but I think alot had to do with all the adhesions that occurred that had all my organs mangled together. When I had my last surgery I had told my doctor beforehand that I was experiencing the IBS before the surgery which I figured alot of it was because of the stress of the total hysterectomy surgery. My doctor came out of the surgery and told
me that my bowels were not irritated that they were down right frustrated because they were so twisted from all the adhesions.
Just think postive and everything will work out :flowerforyou:0 -
Sorry you're going through all this, being in constant pain is the worst! I don't have much advice, unfortunately. That's really what I find most frustrating about endometriosis is there is pretty much nothing you can do about it, I'm constantly harassing my doctors and scouring the internet for some cure I must have missed, but there is virtually nothing out there.
The only reason you should do the lap is to have a definite diagnosis for endo (that's the only way to be diagnosed, also unfortunately.) It's not that bad, or so I've heard (I can't have surgery via laparoscopy because I have too many endo adhesions, so I have to have full incisions for every surgery.)
It's funny you mentioned Crohns, they thought I had that too for a while after my first surgery to remove a bunch of my intestines and appendix (this was before they knew I had endometriosis.) It turned out much later (diagnosed by a specialist) it was endo in my intestines. Most doctors are not familiar enough with endo to diagnose via intestine biopsies, so they were just like, "that's weird, your intestinal walls look thick and inflamed." I've found out over the years some doctors are just stupid and of very little help.
Good luck!0 -
Thanks for replying.
Logical brain thinks it is necessary to find out what is going on in there so we can at least look at sorting it, especially as it seems to be getting worse as time goes on. Unfortunately, scared brain is not so sure. I know it's not a huge thing as it's only keyhole surgery but I've never had any op, or anaesthetic or even been in hospital for more than a few hours, so it's all fear of the unknown. As well as the fear of what they will or won't find.
The crohns thing terrifies me, as my Dads family are riddled with it, and they won't talk about it so all I know is my experience of them being in pain and having ops to have vast swathes of their rotting guts removed. At least though, I'm fairly convinced from my experience of their symptoms that I don't have that, I don't experience anything like what I've heard in hushed tones that they go through.
I do always work myself up about stuff like this, and Google doesn't help matters, but I can't help myself. I once managed to talk myself out of having my impacted wisdom teeth extracted because I'd gone through everything online and in my head and the dentist I work with eventually agreed to cut away a section of my gum and jaw to allow them to grow out rather than having to have an op to remove them because I made such a song and dance about it. I really have to work on that!
It sounds like you both have had your own battles on your hands with this thing. I think it's awful how much people seem to have to struggle to get any help, you'd think there would be more awareness of endo with how many people seem to have it but it's just not there, even in the medical profession sometimes.0 -
Got the lap appointment through. A bit less than they said, it's in three weeks time!
Helpfully, the letter just said about the appointment. I have no information, no leaflet, prep instructions, nothing.
They gave me two pre-op drinks when I had the specialist appointment. I don't even know how or when to take them. Can I drink water before? I drink constantly and get headachey and woozy if I don't, might cut out the need for anaesthetic if I'm not allowed anything all morning. It's supposed to be 11am and all the letter says is don't eat after midnight if your op is in the morning.0 -
Hello phoenixoncemo!
Try not to think about the op too much. I know that's easier said than done! I had my first one cancelled on the day when I was sat in the ward waiting to go (I've got wonky blood and I think they thought I would bleed to death on the table...) and annoyingly was much more nervous come the rescheduled day.
I don't think you're allowed to drink beforehand, as you could choke on your own vomit during the procedure. I can't really remember if I was allowed to or not - I'm like you - I feel ill if I can't drink. Do you have low blood pressure?
I've also got an immovable uterus. I found out during an examination by a gynae; she put her hand up me without warning and tried to shove it backwards. The pain was unbelievable. Cow.
The surgeon told me they had to open my vagina with a speculum during my laparoscopy in order to move my uterus out of the way, as it was obstructing their work. I had a bit of superficial bleeding afterwards, but nothing serious. Don't let this alarm you, I'm just forewarning you!
I'd never had any operations before either and had also never had to have an overnight stay in hospital, so really didn't know what to expect. Following the op, I was mainly off my head on morphine and other painkillers, so it all floated by in a blur. Annoyingly, my consultant came to speak to me about what they'd found and what treatment he recommended when I was at the height of my morphine high, so I had to go to see my GP a few days afterwards to find out exactly what was going on.
In my case, they found extensive endometriosis in various places (including my pouch of Douglas - makes sex very painful
- and my ureters) and my left ovary was stuck to the wall of my abdomen, which explained the awful pain on that side and the pain when I tried to walk. Once I had healed, the relief was enormous. They wanted to give me Zoladex injections for six months, to put me in a temporary menopause to give my body a 'rest', but I read up on it a lot and decided against it. Instead, I looked into changing my diet to try and ease the symptoms and stop it from spreading again. I think my doctor was wary, but she let me get on with it. My consultant simply dismissed me from his patient next time I saw him without even asking me any questions. However, this was 2009 and I haven't had to go back since. I avoid wheat (started off avoiding gluten, but now eat rye), soy, dairy (I occasionally eat goat and sheep cheese for the calcium), alcohol, sugar and only eat red meat every few months or so. I only eat organic meat, to avoid the hormones. I really should eat organic fish too. I also eat organic vegetables to avoid the pesticides. I use natural toiletries and detergents. I'm not always an angel with my diet, but generally I stick to it. In the past year, my period pains have got slightly worse again, but generally I've seen a big improvement. I definitely recommend avoiding soy, as it has oestrogenic properties - I started eating it again recently and started having a lot of problems with womb and ovary pain, ridiculously heavy periods and abnormally swollen and painful breasts. When I realised what was causing it, I soon stopped.
Anyway, good luck! Sorry, this turned out to be a bit of an essay...0 -
Thank you so much for replying and all the infomation, it's really helpful to get an idea what they may do.
I ended up having to ring them, as their letter was as clear as mud. I was talking to my friend who has had 3 laps done and she asked whether the surgery was 11am or I was supposed to arrive then. I didn't even know that. The letter literally had a list saying Doctors Name, Date and Time with a little sentence under saying not to eat after midnight if your op was morning or after 7:30am if it was afternoon.
So apparently, I get there at 11am which means it will be in the afternoon. This means for me I will get up at 7am and have breakfast and maybe several cups of tea, coffee and water! I explained that eating wasn't a problem as I can easily go a day or so without food but more than a couple of hours without liquid is incomprehesible to me. She said I can drink water in small amounts to keep me going until 11am and that they would likely give me water in the hospital while I was waiting, just don't drink gallons of it. I have to drink the pre-op drinks they gave me between 10am and 11am, so that's some liquid at least.
I don't know if I have low blood pressure. They've never mentioned it, from looking at the screen when they do it I find it's usually a little less than the standard, I think last time it was 110/70-something from memory, so almost dead on - it may have something to do with being a tiny person though?
Oh I feel your pain about the evil exams. I'd always been ok with them until they did my last lot of swabs. The nurse had a bit of a dig at me about it:
"I've never seen anyone manage to fire the speculum out at me while it was open in all my years..."
Trust me, it was unintentional. This is not my party trick, I don't work in a seedy Thai strip joint on the side, and it hurt me more than it hurt you! I bled for about a week after that one. :grumble:
Thankfully, my other half is driving me and although I told him he can go off into town as it will be boring he is insisting on staying with me. So I should have another pair of ears to listen to anything they say if i'm too dopey to remember.
I looked briefly at the diet but it was so complicated I gave up. I can't really afford to buy organic like a lot of the recommendations I saw. But thankfully I don't much like soy so I avoid that, and alcohol tends to upset my stomach so I very rarely drink. I was vegetarian for years and I didn't get a huge amount of a taste for red meat back, although I have minced beef once a week, mostly for the haem-iron. I just don't think I could live without sugar or cheese though! I may look into it in more depth though to see if there are some smaller alterations I can make that might help. I'm glad to hear it's worked so well for you though.
I've told work i'll be off for 4 days, which I'm hoping should be long enough to recover. Hope the weather is decent that week, I can recouperate lying in the garden, right? 0 -
Ha, the bit about you firing out the speculum made me snort with laughter (not the bit about the week's worth of bleeding though...). Last time I had an examination, the doctor tried to shove it in without lubrication, which was hideous. She told me I've got a 'tight entrance'. Ahem.
It might be worth checking about the amount of time you'll have to have off work. I told work it'd probably be a week, but I was surprised to be signed off for 2 weeks. The weather was delightful when I was off too and I recuperated outside, so I definitely recommend it.
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Hi guys,
Just updating. I had the laparoscopy on Tuesday, I'm off recovering at the moment. The heatwave ended unfortunately, so I'm not recouperating in the sun but it's not too bad!
This is going to be a long post. I figure not only is it good for me to get it all out there but also if hearing about my experience can help somebody else know what to expect then it can only be a good thing.
My body being contrary decided on the Sunday before my op on Tuesday to give me natures little gift. That was a pleasant surprise as I'm sure you can all imagine.
I had to phone them to make sure all was ok to go ahead which it was. I have never had so many people so interested in getting my pants off! Seriously, about 8 different healthcare professionals throughout the day.
Them: "Are you still wearing your pants?"
Me: "Yes, it is necessary. I'm bleeding."
Them: "Ok, but we'll need them off soon."
So, if you are wondering (as I googled this and rang NHS Direct and there was no information) you can have a laparoscopy whilst on your period. You do have to tell everyone you come across that you are on and to let you keep your pants on (!) but when you get down to the operating theatre they put a disposable mat/towel thing on the bed and then you have to remove the pants, which they put in a bag for you, you are not allowed to wear a tampon, and when you wake up they will have put your pants back on with a jumbo maternity pad in for you. In my case they managed to put my pants back on inside out, but as long as they put my insides back the right way around I won't worry about that too much.
I actually saw the inside of the operating theatre because of this. Apparenty they normally put you to sleep before they take you in. It's fine, very sterile and full of bleeping machines. The anaestesiologist was lovely and put me at ease, she said that the anaesthetic when it starts makes you feel a bit drunk and just to think of it as a few G&Ts on the NHS! She was talkiing to me as I went under and I said my arm was cold, she said it would start to ache, which I agreed with and then she told me not to worry about the machines beeping as they do that throughout. I told her I was trying to ignore them and everything else in all honesty, laughed and then the next thing I remember was coming to with her next to me on a ward.
She stayed with me as apparently my heart rate dropped to 35bpm during the operation and after. I did explain that I know from my HRM that my heart rate at rest is usually only about 60bpm.And I fidgeted about to bring it up some, she gave me a shot to bring it up a bit as well and then she had me hold my breath for a bit a few times. Apparently with younger fitter people (never thought i'd be in that category!) there is a 'something' arrythmia that means your heart rate speeds up slightly as you breathe in and slows as you breathe out. She then wrote a note to the recovery people saying it was ok to take me as they normally won't unless your heart rate is above a certain level.
I then went to the recovery ward. This was the worst part. By this point I felt absolutely fine. I really wanted to go to the toilet and I asked them, but they wouldn't let me go alone. Fine but after half an hour passed I really really needed to go and had to moan at them quite a bit to hurry up! I know they are busy but honestly I needed to go! They wouldn't leave my side although thankfully waited outside the cubicle. The catheter they put in during the op to empty your bladder means this is like peeing razor blades! I would recommend doing this slowly and gently but that is easier said than done when you need to go that bad. They also won't let you leave until you have peed, to check everything is working as it should be.
I hadn't been able to eat or drink since 7am and I went down for the op at 3pm. By this point it is now 5:30 so I just about snatched their arms off when they offered me a cup of tea. It's one of those pathetically small polysyrene cups so I had that, plus three cups of water and some chocolate biscuits. They offered me a sandwich but the only choices left at this point in the evening were turkey or corned beef so I stole another pack of biscuits instead.. These came out in a Celebrations tub, I thought I was getting chocolates - disappointing!
The doctor then came to see me. This was not good. She was clearly wanting to get out of there and got really narky about me asking her questions and pretty much refused to answer them. She showed me the pictures they had taken. Including a patch of endometriosis that got rid of using diathermy and a pool of blood in my abdominal cavity. But them kept saying that the results were "inconclusive"
WHAT THE ACTUAL HECK??
You just showed me the endometriosis. And you burned it away. And you showed me the blood collected outside of my uterus which must be from the endometriosis as it bled while I was on my period. How is any of that inconclusive? Her response?
Doc: "Well, yes, but it was ever so tiny. In fact we even had a discussion in the theatre as to whether to even bother doing anything with it"
Well, I'm so sorry to have inconvenienced you! Being a bit emotional from the general anaesthetic I started crying, out of frustration more than anything. I did apologise to her, and explained that I have had 12 years of being told there's nothing wrong with me and I just wanted answers. She then opened the curtains so I am now crying in front of a ward full of people, walked to the desk, collected her bag and made directly for the exit. I noticed the clock now said 5:45. I guess she just wanted to go home. I resolved to ignore her as much as possible and make an appointment with my GP when I got home to ask him to explain it to me, she also had some follow up treatment suggestions for me to go through with him too.
Now at this point all I want is to get the hell out of there. And have a cigarette. The staff in recovery would not allow me to use my e-cigarette. And after about an hour more of me *****ing and moaning at them they begrudgingly allowed me to get changed to go. They did not like me walking up and down the ward, sitting still caused the gas they inflated my abdomen with to get stuck under my ribss which felt a little like a heart attack. This continued for about 48 hours after and is I think the worst part. It was also in my shoulders but that wasn't as painful. I put on my PJs and they also got a bit funny about that, saying I should wear my proper clothes. I argued that I was comfortable and only going to the car, and I didn't care what the people in the car park thought! It was at this point I asked after my other half, who I hadn't yet seen. As it turned out, he was sat outside waitng and worrying as they hadn't even told him that I'd come out yet, despite telling other relatives in the waiting room that had gone in after me that their people were ok and having a cuppa or whatever! They took out the port in my hand and finally let me leave.
We went directly to a coffee machine, and then walked to the edge of the hospital were I had a cigarette. I know I'm a terrible person, but I swear I have never needed one more in my life after all that and if they'd allowed me my e-cigarette I might not have broken so quickly.
We went home via Tesco, and all I wanted was cake so my fiance bought me varieties of cake and chocolate and we went home. I spent the evening eating chocolate and walking laps of the living room to try to disperse that gas.
It's now Friday, and my belly is still bloated up like a drum. I have changed my dressings and they have started to bruise up. But I'm ok, just a little uncomftable in places. Literally none of this has been even half as painful as what I put up with on a usual period anyway so it's all fine. I'm booked in to see my GP on Wednesday, so hopefully I'll get a bit of light shed on the situation then.
Sorry for the really lengthy post!0
