post op consultation today and I have gotta have a rant sorry

[Donna1979]

Hi all

I am pretty new to the site I had a laporoscopy about 6 weeks ago and they diagnosed endometriosis. So today I have gone for my post op consultation with a female gynecologist and I though hey great a women.But nope in stead I come out thinking what the hell, what a waste of time

The doctor's notes said I had mild to moderate endometriosis and its been seen on my ovary etc. So I was quite pleased thinking oh not that bad so I asked if the doctor removed any during laporoscopy the answer was "no he didnt wanna touch it'",ok I said whats my treatment options she says I would just do painkillers and i will discharge you. So I go ok but how will I know if it goes to severe if it isan't being monitored. She said just go to your doctors and they will refer you again if things change, what a joke!

Then I explain the pain and fatique I am having and she goes the pain may be due to the endometriosis but it does not cause fatique, so go back to your GP and ask them to run tests on my hormones, thyroid, diabetes, hypertension, and some illness beginning with F not got a clue what it was. Oh and then she told me to ensure my bowls were working ok cause that would cause pain. So yet again I must have something like IBS what a load of rubbish. Sorry for the language and the spelling mistakes lol but I am so angry with the Doctors and what a waste of my time.

[peppa_roxi]

hi,

oh what a shame you to have been fobbed off with pain relief and told to go away and basically suffer until you can no longer bare it ! I say get back to the docs and demand they do something, I have been on pain relief for endo for nearly 6yrs and have finally, after many visits to GP and GYN been told it is so severe and caused other problems i have to have a hysterectomy. So tell them you want it removing and monitoring. Bloody joke.

I feel your pain, x x x

[Donna1979]

Hi

Thanks hun for your response I have now made an appointment with my GP for the 6th september and I plan to do exactly as you say. I have asked advice on another site and they say I need to see an endocrinologist so that's what I am going to ask for, That's what I want, I want the spots of endo removed while it is mild because surely its more pro active than taking medication that only masks the symptoms, and does little to maintain or minimise it or that's my thought process behind it anyway lol.

[bonygirl1 in reply to Donna1979]

Hi hun, I would ask your doc to refer you some where else and get a second opinion. My local hospital couldn't deal my extensive endo and could only offer me a hysterectomy so I was referred by them to a hospital in Manchester, 2 hour journey for me, to see how they could help. I travelled for approx 10 months for various appointments and in June I had my second lap.

It annoys me so much when these so called gynecologists can just discharge us even when we have pain. Don't give up, do some research on the internet for endo specialists in your area. Take care X.

[JulesUK]

Makes me so angry so many of us get fobbed off like this, you have to make a fuss and demands just to get the treatment you should be having in the first place. I can't believe they did the operation but didn't do any treatment right then and there, surely if you find something you treat it? Demand to be referred to someone else. Don't worry about making a fuss. Good luck.

[Donna1979 in reply to JulesUK]

hi Jules

Yeah that as annoyed me its just unbelievable and from what I have read if they remove it when its at the mild/moderate stage it can relieve pain and symptoms for some time but not in all cases but I was not even offered this option I am going to go to my GP appointment on 06/09 and discuss why this would not of been carried out at lap stage when the endo was seen and why I was not offered this option at post op cause I am just not happy one little bit with the take pain killers and go away option until you get really bad.

Bonygirl thanks I am so sorry you have been through so much hun and had to mess around so much to get treatment its just not acceptable is it hun.

[JulesUK in reply to Donna1979]

It's stressful enough leading up to the op without having to through it again because they didn't do anything. Good luck with your appointment.

[help1986]

Hi donna please I beg u, push for it to be sorted asap! Thats is my 1big regret! I have lived with it for over 10yrs & was told ibs, "just painful periods" was on cerrozette for nearly 5yrs just to shut me up, but was still in pain.its only because the last 2yrs iv been trying for a family been in severe pain that the gyne gave in "to put my mind at rest" now I have severe endo wiv choc ovarian cysts & in 4months iv had 2laps & having hormone treatment.please get 2nd opinion & demand treatment coz I wouldnt want any1 to go through wat I have had to xx

[help1986]

Hi donna please I beg u, push for it to be sorted asap! Thats is my 1big regret! I have lived with it for over 10yrs & was told ibs, "just painful periods" was on cerrozette for nearly 5yrs just to shut me up, but was still in pain.its only because the last 2yrs iv been trying for a family been in severe pain that the gyne gave in "to put my mind at rest" now I have severe endo wiv choc ovarian cysts & in 4months iv had 2laps & having hormone treatment.please get 2nd opinion & demand treatment coz I wouldnt want any1 to go through wat I have had to xx

[Donna1979 in reply to help1986]

Hi Help I am so sorry to hear what you have been through hun I hope you are ok its not a nice condition at all and I really feel for you I hope your treatment is successful and you are blessed with a little one soon,. I do fully intent to push it further and demand treatment I think the attitude of go away and live with the pain until the condition deteriorates is disgusting and that was from a female lol. I am hoping that a Dr will agree to remove the endo now and then monitor cause I think that may work for me and even if it did come back it could initially buy me some time pain free until it does return xx

[help1986 in reply to Donna1979]

Yes the gyne that misdiagnosed me for several yrs was a woman.the specialist I had was a man n he was excellent.good luck, wish u all the best!xx

[Hidden]

I completely agree with others who have recommended getting a second opinion and pushing for better help. The other things I wanted to add are firstly that pain is incredibly tiring to live with. Always having to push yourself that bit harder than people who aren't in pain. I wish doctors would realise that. The illness with F might well be Fibromyalgia? It is a syndrome that is believed to be caused by the body becoming over sensitised due to being in pain in the first place. Good grief surely doing the reverse would make more sense???!!. I have Fibromyalgia and it means that pain is magnified, pressure on certain points of the body cause a building pain - e.g. if I scratch my back the pain blossoms, grows, peaks and then takes several minutes to fade away. It also causes chronic fatigue. I feel sometimes like I'm wading through treacle with no strength within any of my limbs. It also causes general aches and pains and makes you feel like you are just starting to come down with flu - real flu that is. Not just a really bad cold that people say is flu and isn't (usually when they are standing there looking snotty but otherwise fine - flu means not being able to leave your bed). So that level of feeling ill and in pain. Does that sound like you at all? Get as many tests as you can, or can cope with! Some doctors don't consider Fibromyalgia - you would have to see a rheumatologist as it is a process of ruling out of conditions and the idea that 'if all else is excluded this is all that is left'. No cure - just painkillers and tricyclic antidepressants as they are supposed to help raise the pain threshold (or something similar).

I was offered a lap to just look - it was about 7 years ago. I turned it down as I couldn't see the point of just looking. I regret that of course as I'm now facing the same thing again. Although I will be heavily suggesting that they do something whilst having a look! I potentially have adenomyosis - not sure what that means in terms of potential treatment. The gynae did say that using a mirena coil would probably be my best bet. However I've not heard good things about that (any views welcome). Also progesterone wrecks my skin. I get severe enough acne now without anything that could make it worse. I'm not just talking spots - nasty septic lumps. Very painful and disfiguring as it often leaves nodules in the skin. Terraforming for the face. Mm mm.

Well, I hope that is of some use.

Take care and good luck.

Dx

[Donna1979 in reply to Hidden]

Hi DizasterDeb That's what she said Fibromyalgia thank you she said she felt there was a strong possibility of that. The tiredness oh boy that is the worst and getting worse I feel ill all the time with pure exhaustion no energy levels I work part-time and push myself to get through the days then on my days off I just cant move no energy to do anything at all, getting up in the mornings are a real struggle I have to because I have 2 kids also so I need to function to some extent but if it wasn't for them I seriously don't think I would get up if that makes sense.

My endo pain is not always crippling but is on occassion an example is this month for example (I track my pain levels each day over the month) so this month from the full month I have had back and stomach (left side) pain and severe tiredness for 3 weeks in total and I have had one week with hardly no pain but feeling severe tiredness. The pain this month as been moderate but pain killers have taken the edge off but not shifted it. On a bad month the pain starts mild then increases to moderate then floors me to the extend I am in bed and cant move and no month seems the same so the pain levels are unpredictable from month to month however the low energy levels and feeling exhausted are always there xx

[Hidden in reply to Donna1979]

Yup, sounds like Fibromyalgia. I totally understand what you're saying. The fatigue is unbelievable. I couldn't think of how to describe it to get people to understand. People make helpful suggestions such as food processors so you don't have to chop up veg manually and so forth. They don't get that even getting out of bed sometimes seems the most that can be achieved.

My eldest sister realised what I meant about the fatigue one day when she remembered how she had felt so bad out walking that she couldn't lift her legs up to take simple steps to carry on, she was so exhausted she had to sit on the edge of the pavement for a while (lives in a village). Next day she had flu. Then she realised that helpful suggestions aren't helpful - chopping veg? On bad days it comes pre-chopped and who cares if it's expensive and we can't afford it! I can't work as I have rather a large range of conditions/syndromes that cause pain, immobility and so forth (boring!). I help my husband with admin for his electrical company.

There will be days where it is hard to sometimes impossible to try and carry on with it. It does make me rather glad I don't have children I do admit as I know it would be tough until they were old enough to be relatively self sufficient. Although it was partly health reasons that I didn't plus the rather likely certainly that I wouldn't have been successful. A lot of people I know with Fibro have got their children as independent in the home as possible (once at a sensible age) able to do their own cleaning, laundry, cooking. Not only is this good for their future independence and teaches them that running a home is a shared responsibility for all who live there but they can then help you on days when you simply can't manage.

You will find that you do have a few days or weeks where you don't feel so bad and can almost carry on as normal. It doesn't last but you will come to know that it will happen again and just have to do your best in between. The rheumatologist I saw said 'use it or lose it' so do keep going when you can otherwise muscles waste away but rest when you really can't manage it. There is a lot of information on the internet so have a good look but I'm happy to answer any questions you may have. It certainly makes any pain you have feel far worse - so if you have a condition like endometriosis you may only have mild to moderate but for a Fibro sufferer it will feel more like moderate to severe. Tell your doctor that this is a likely diagnosis and ask for a referral to a rheumatologist - but still see the endocrinologist! If you have any blood tests tell the nurse - they can pick a finer needle than the one the automatically use! Stunned me a bit - I only told her so she went as gently as possible as didn't think she could do anything else but she said 'oh, I'll use a finer needle then'. Now if I'd known before there was a choice..... Was definitely better.

One other thing the rheumatologist said - painkillers will never completely relieve you of pain. The idea is to make it tolerable and bring it down a bit. He said if you say that what can be described as 'normal' runs along at one level with pain high on a line above, all painkillers can do is bring the pain down to a line that is nearer the normal one. Unfortunately he was right. I was diagnosed in 2007 with FBS (Fibromyalgia Syndrome). IBS is a common problem so is temporal mandibular jaw syndrome and a fair number of other syndromes. Depression is practically expected.

I hope that is informative and not too depressing.

Cheers

Deb

x

[help1986 in reply to Hidden]

I can relate with u with the acne! I've had terrible acne for 16yrs. I've spoken to a couple of people with endo n they have severe acne too so duno if they go hand in hand.a couple of people on here have had the coil n its been better than the pill but takes couple of months to work x

[islakittycat]

Hi donna sorry to hear you in a similiar situation I was in. I ws diagnosised on 4 th lap 10 yrs after 1 st lap. the consultant discharged me with pain killers as I react badly with hormones. I am so much and suffer from fatigue all the time. Few months ago watch a gmtv programme about new surgery excision of endometrosis back to undismayed tissue, its not new its just specialist. After reading questions and answers of endometrosis by ... I then research and find and endometrosis clinic at colchester hospital an hour away from my local hospital southend. I went to the gp armed with research and asked/pushed for referral . i am now a patient had mri to check bowel today and due to have another op to remove endo back to hood tissue. Here is link for nhs endometrosis clinics bsge.org.uk/endometriosis-c... All the best of luck don't give up its your body you know Isla xxx

[teacosey]

In my experience, it is a fail-safe to take a print-out from the NHS Choices website with me to the appointment. As you have actually been diagnosed with Endo, albeit mild, you can print off that page and highlight on it what you want from them--eg. a laparoscopy with removal of the endo sites.

I always do that, especially for GP and (what I call) average level Gynae's (the specialist Endo Surgeons, in my experience, don't need to be lead much to give you decent help). It may sound silly, but they are humans doing a tough job and they sometimes need to be strongly nudged in the right direction from a source that they deem as proper--eg. the NHS itself.

(Always use NHS Choices, I'd say. I've never yet met a medical person who approves of unofficial health websites)

Also, if it were me, I would also ask for more details on why the endo sites weren't removed while you were in theatre, why he apparently "didn't want to touch it". There might be a legitimate reason, other than the surgeon's apparent aversion. Maybe he was concerned about the endo's specific location and didn't want to compromise your ovaries or fertility, maybe he didn't feel experienced enough and wanted to refer you on but that somehow your post-op person didn't tell you that or the referral has been missed, or maybe it was mild enough that he felt the risk of surgery outweighed any benefit for some reason specific to your case. If it were me, I would definitely want more factual info than what you have been told so far.

Plus, it is your body so you have a right to ask what your options are, and to state which of those options you would prefer.

Hope you get what yo uneed

Tea Cosey x