Endo and Work stress!!

[Penguin84]

Hello All,

Ive just joined this so I am a tad nervous (silly I know), my mum encouraged me to join, she herself had this condition before and after I was born so she can relate to how I feel and is amazing. I have a fantastic Husband and family but I feel like Im boring them and I don't wont to worry then all the time.

I was diagnosed with Endometriosis last year after many many months of feeling so ill, I had previously 4 years ago had a laparoscopy and had the coil fitted as my consultant said this was the best thing for the condition but it wasn't properly picked up until last year. I initially felt alot better after having the lap and the endo being lasered away but now 8 months later Im feeling worse than ever, im seeing the consultant again on Wed and my GP is referring me to the Chronic Pain service but I just want to cry really, im fed up with having to take strong painkillers that make me feel like a zombie but what choice do you have when you feel so unwell!!!. I'm getting such bad miagranes with this condition (the consultant says the coil makes miagranes more common but he wont take the coil out as it would make the condition even worse) so I feel even worse.

The worse thing for me at the moment is my work I have reduced my hours significantly to help but at the moment the pain is so bad and I feel so unwell that its making it impossible for me to work properly. My manager has no understanding at all about this and is basically harrasing me about the time off so I'm currently fighting my cause at work with my union rep who is fantastic. I just feel like I don't know what to do at the moment. My GP has said that she will sign me off work at the moment as the stress from work is making me feel even worse but im scared il loose my job.

I'm planning a trip to the CAB soon as I feel there must be some sort of financial help available to me as I cannot afford not to work. Maybe looking for a job with less hours would be best I just don't know, my manager has said my high sickness absence due to this condition wouldn't look good on a future job reference but Im told by my union rep that they cant discriminate against me for this.

Im feeling so ill and stressed at mo. Does anyone out there have any advice or similar stories id love to know and chat ;-).

[Cat75]

Hi Penguin84, i,m sorry to hear your going through this terrible ordeal it is much similar to what i went through a few years ago. I had my endo diagnosed 2 years ago and told i,d probably had it for 17 years, The health professionals won,t give me a coil or hysterectomy because i,m still of child bearing age even though i,ve already been told i can,t have any children. Before my diagnosis i had a very good job which i loved but was constantly struggling to get in due to constant pain. Eventually i was retired on ill health grounds but i now know that i maybe should have been offered more help from my employer. I am a constant follower of Endometriosis uk and its a wonderful organisation, they have online leaflets explaining your rights as an employee and also your employer obligations etc to help you stay in your job. Its too late for me now to fight my cause but i hope this helps you to stay in your job even with this awful disease. Hugs xxxxxxxxxx

[Penguin84 in reply to Cat75]

Aw thank you knowing this is here is a great support to me. Thank you for your advice I will take a look at the leaflets ect.

Im sorry to hear your troubles, this disease is a horrible one and is so misunderstood by people. I will fight on at work I just feel angry that we get treated this way, I have a meeting about it on Friday so hopfully this will get something sorted. xxx

[Cat75]

Your right it is very misunderstood by other people, even my family don,t understand thats what makes it so lonely at times but with more research by Endo UK and other organisations like it lets hope they find a cure sometime soon. Good luck for Friday, let me know how you get on ok and take as much info from Endometriosis UK that you can get. xxxxxxx

[memyselfi]

Hi there,

I'm a bit puzzled about the migraine thing, if you have noticed a correlation between having the coil and an increase in your migraines and you want the coil removed, they can't refuse.

However, as someone who has migraines myself, I know that they don't necessarily follow a regular pattern. There have been times (when I was living in other countries) when I have had no migraines for 3 years! Then, times when I have had five over a ten day period.

It's taken a while, but I've finally realised that mine are spring migraines, I don't ever remember having one in the winter so I get clusters of them and then none for a while. Probably due to light levels or something weather related.

I was very worried about the Mirena making them worse and put off having it for a long time, but in the end had it put in in the summer and I've had no migraines until this spring, so I don't think it does affect mine. Therefore, I've kept the Mirena. If I'd had it put in in the spring, and then had lots of migraines I probably would have made a false connection between the two.

So it depends on what sort of migraine you have, I think. Is it the whole flashing lights and neurological thing? Do you feel they are hormone/cycle related?

If it is flashing lights and the rest and they are happening on a monthly basis then logic would suggest there is a hormonal trigger, in those circumstances I would go back to my GP or whoever, with a record of what is happening and ask them to seriously consider removing it. (Personally, I would insist, but then I'm quite awkward like that!)

The only thing that the coil has helped me with is the monthly period pain from my uterus, which was horrendous before but which is negligible now because of the implant. I do still have crippling pain every month when the endo outside the uterus bleeds, and I have general pelvic pain pretty much all the time. I too have been told that having the Mirena will reduce the growth of the endo outside the uterus, but then I've also been told (when I was worried about migraine) that the hormones don't go any further than your uterus -those statements can't both be true, and so maybe don't rely too much on it reducing the growth on other organs or in the pelvic cavity.

There are other options for reducing your pain, hysterectomy for one, and so I would speak to your consultant again, outlining all your concerns. There isn't a magic answer to any of it, but each treatment has pros and cons and all of us need to decide what is best for us individually.

Very best of luck, the work thing sounds like a nightmare. xxx

[Juleyanne]

I once had a coil myself for endo on the long ardous journey of living with endo and adhesions.

In my case it dislodged and was causing me enormous pain (I later found out at A & E where I fled)

and they told me that removing it may render me infertile. Despite that I begged for them to take it out and I had an infection too as it was digging into my womb. The relief was immense!

I am really surprised, your Gp has not suggested Zoladex injections with synthetic hrt but then again I am not a doctor. It seems that this is the early approach to endo these days. Zoladex injections which are monthly (in your stomach) send you into a pseudo (temporary) menopause, thus fooling your body not to menstruate where oestrogen (the fuel of endo) is stemmed. If oestrogen levels are minimal then endo is effectively stopped in its tracks! It won't stop the endo you already have, but it will help to stop it spreading and accumulating. They usually give you a synthetic hrt with very little oestrogen and more progesterone (which doesn't feed endo) to balance your hormones. There are side effects which can mimick menopause, which feels a bit like PMT X 5 which can make you a bit up and down but if it really is endo causing your problems after a few months you should start to feel better. They only give it to you for 6 months as it can weaken the bones if taken for longer (that is why post menopausal woman can develop osteoporosis as the menopause isn't always good for the bones). If it's adhesions (scar tissue adhering to other organs) causing your pain and symptoms it won't do anything, which is what happened with me.

It confirmed although endo was my original problem, it was the subsequent adhesions that where at the root of my problems) this is what the Gyne told me! I know Zoladex injections are expensive

(they are known as the 'gold star' of endo treatment at £300 an injection and up to six cost the NHS £1800, so maybe it's a cost issue! I would ask your Gp. Mirena is supposed to stop periods but personally I have not heard of many success stories with this method and my experience was not good. Have you seen an endo adhesions specialist Gyne? Some gyne's are not as experienced with endo as others! Sorry to hear about your problems at work, I agree seeing CAB is helpful, and keep in contact with your local endo support group for advice and help. The more back up support and evidence you can get, ie supporting letters from Gps, Gynes, CAB and help from endo groups the better. Maybe even contact your local Mp, I am not sure if he or she can help but worth a try. The CAB might even suggest some legal help. I have read so many stories of women with this condition struggling to keep their jobs and employers often being ignorant and quite ruthless where endo employees are concerned. The lack of recognition and knowledge about this often disabling condition is appalling and has to change. I am presently torn between going for more 'often adhesion causing' surgery which just 'might' lessen my pain and symptoms or attempt rejoining the workforce. I am absolutely terrified at both options, if I work I know I will struggle with pain and symptoms, if I go for surgery, I have been told it could work but may make adhesions worse, so reading your story hits a raw nerve with me and the whole thing makes me angry that women with this life wrecking condition should have to suffer so much with pain and symptoms and society ignorance as well! All the best.

[stevieflp]

I note you had laser treatment for your endo. This is not the best of treatments as it tends to remove endo from the top layer. It is likely that your consultant is not a specialist endo surgeon as they tend to do 'excision of endo' rather than laser.

My consultant described it to us in gardening terms as my other half is a gardener:

Laser Surgery: Burns off the top layer of patches of endo. However, this is a bit like a gardener cutting weeds off from the ground level and ignoring the roots which will likely spring up again in the not too distant future. As the laser causes scar tissue as it is a burn, the roots cannot come back up in the same place. I have seen lesser experienced consultants telling ladies who think their endo has returned following laser "no, it can't be the endo as I removed it". Yes but not from the root and most probably not all endo that was present either as it can be unseen.

Patch Excision surgery: This does what it says on the tin and removes patches of endo. In gardening terms it removes the top of the weed and the deeper root. This is the preference for gynaes who are more specialised in endo surgery and definitely for endo consultant surgeons. This cuts endo away rather than burn it and it takes it away from the surface and at the deeper level so that particular patch of endo is not so likely to re-appear. However, if you have more extensive endo that just patches, it will not deal with the whole problem and you will likely end up going back for further laps to have further patches removed. It is good for less invasive cases of endo.

By stage 4 though endo has generally spread beyond identifiable patches to covering most of the peritoneum. Therefore, patch excision, whilst this will be much more beneficial than laser, will not remove all endo but parts of it. Some lesser experienced consultants do say that it is dangerous to remove some endo and leave you with it - they should be referring you onwards to a specialist endo consultant and or other specialist surgeon depending upon how endo has affected you (i.e. bowel, bladder etc).

For stage 4, the best available surgery at the present time is 'total radical excision'. This is excision surgery but not in patches. It it is all done keyhole and it strips out the whole lining of the peritoneum, thus removing seen and unseen endo, separates organs that have become stuck together and it heals more cleanly than laser or patch excision with less likelihood of adhesions forming.

I hope this will help to give you some overview of the types of surgery offered for endo and their efficacy. Treatment should be commensurate with the degree of endo - but I personally believe, even for minor small patches of endo, excision surgery should the standard.

If your consultant is a general gynae who does not particularly specialise in endo surgery but has it as a string to many bows - I personally would ask for a referral to an endo specialist consultant surgeon who specialises in excision.

If you get your endo sorted out by the right consultant, it will follow that your work problems will get better too I so feel for you going through all of that stress on top - it is so unfair.

I underwent total radical excision over 2 years ago and have not needed any time off work for endo since. Maybe I was just lucky but it helps to get the right treatment.