Could anyone please help

[Tozzy]

Hi all,

Hope you are as well as can be?

I was wondering if anyone could give me any advice/help as I have been struggling for some time now.

I was signed off with abdominal pains in August and am still signed off 7 months later. I had my first lap on 24th September which they couldn't treat the second lap I had was on 11th October which they treated with laser, I was diagnosed with moderate endo.

My consultant at the time said after my lap my pain will go away and I will feel like a new woman. Well that didn’t happen, I still have my pains every day and the only way to describe what it feels like is like having bags of sugar hanging from my bikini line abdominal area, the pain is there every day and gets very very bad around my period time, although I have now been put on the pill but have had a few periods since. I am also experiencing underarm aches; get really sweaty in my underarm area which never used to happen and on some days I feel like my breasts feel a little ache too, my right thigh also hurts along with my lower back and I constantly feel exhausted. I went back to my doctor and Gyni and both ruled out it being endo pains as after lap it should have made the symptoms better, so now I am being tested for the Celiac disease, my bloods came back positive but I have to wait for my biopsy results that were taken today which will come back after 6 weeks but my next app isn’t until mid August. ?

I’m not sure what to do, I feel so tired of all the waiting and being in pain all the time. I haven’t been able to work since August and am worried that my work will soon let me go. Has anyone been through similar things? Should I seek to have a second opinion? Can anyone suggest a good Gyni in the Hertfordshire or West London area? Last question I promise – nothing seems to get rid of the pain – could anyone suggest ways of dealing with pain apart from my new best friend my (hot water bottle).

Sorry for my long message but I just feel like giving up Toral

[Lillil]

Haven't got long so sorry for short reply...

Have you had hormone treatment like zoladex? If not what were the gynaes reasons cor not using these? I have only just started and even though you can get severe side effects from them, supposed to help your pain from end of second month.

I swear by my tens machine, even though it's expensive it's well worth it! It has stopped me taking stronger pain killers as regularly.

What pain killers are you taking? Make sure you get stronger ones if your not managing.

Unfortunately not many people will do much until you get your biopsy results as they will blame that. Did they advise you to start a wheat and gluten free diet to help alleviate symptoms ?

I have been off four months and its driving me mad all i can say is don't give up. You should not be made to live like this. Take someone with you for support to drs, keep a pain diary and believe in yourself.

Hope you get some relief soon xxx

[Tozzy]

Hi Lillil,

Thanks so much for your reply. The only treatment I am on is the pill they haven't put me on anything else and have never even mentioned Zoladex. I have never heard of a tens machine just googled it - will investigate a bit more into this.

The only pain relieve I am on is neurofen every 4 hours but that doesn't take away the aching pain ever.

The doctor did say I can start a gluten free diet as of today to see if my symptoms improve so I think a visit to one of the free from isles in the supermarket is due.

I have an appointment with an occupational health officer from work next week too, god knows if he/she will even understand what we go through.

Thanks you so so much for your reply, I really hope you feel better very soon.

T xxxxx

[Hidden]

Hi T - my lap 3 weeks ago - surgeon said he'd cut out all of the endo. Week later I was back in in agony and the unltrasound scan showed more endo. My surgeon was NOT an endo specialist and when you research this on internet it usually says that only an endo specialist knows where to look etc. My pain has not gone, gynae have said theres nowt more they can do. I have now booked a private appt with a endo specialist monday as I too want to know about pain management, options and work. Its costing my mum £200 but hopefully will help me to feel more in control again. P.s. occ health could always negotiate you returning to work less hours initially etc x

[Hilary100]

Take Control of your Endometriosis by Henrietta Norton is a great book to help with diet and you might find the Coeliac UK website helpful. Amazon sell a good TENS machine

[Hidden]

Hello T. I was diagnosed in 2005 and had a laparotomy in 2007. We put our trust in Doctors because they are experts, but I don't believe that all obs and gynae doctors are endometriosis specialists. Thank god the operation was a "success".

Even so, in answer to your question on how you're supposed to feel after such a massive operation; I didn't feel myself for at a least a year. I had the same kind of aches and pains but not as intense as before. Please give yourself some to time heal. I can also vouch for the gluten free diet. I'm not a coelic but from experience I can tell you that it definitely helps to lower gluten and dairy. If you find it difficult to cut gluten out immediately then at least start introducing gluten free meals to help you adjust - I'm currently doing this as I used to be gluten free but then as I started to feel better from the op, I let my diet slip again.

As for the pain, we all react differently to it. I don't like to take heavy medication, in fact tramadol makes me throw up, and codeine causes constipation which is a big no for me. I agree with the above that a TENS machine is great, I regularly use mine not just for back pain that I get from endo, but also for a neck injury. It's worth getting a decent one, invest £50. I also wish I could walk around with a hot water bottle! Can you get some of those heat patches? They sell them in places with B&M for cheap. As long you don't place them directly on the skin, they must on clothing otherwise you will burn yourself. I tuck a thin camisole into my underwear then place a heat patch when I desperate onto my lower back on the camisole, under a shirt/blouse.

Last but not least - I think stress is a causing factor. You might not find this very helpful at all, but sometimes I get so agitated from the injustice of having this disease, fighting a constant battle at every step, family, doctors, work, friends etc. that sometimes I just gotta let the stress go, because if I don't I might go mad! Invest time in helping to relax (yeah I know..), but it helped for me. I hope your day went ok. Let us know x

[Tozzy]

Hi Ladies thank you so much for your replies - means so much to me - it really does.

Singer62 - i have started my gluten free diet as of today so fingers crossed that it makes a difference to my pain, I got a bunch of food from the Tesco free from isle, like you I don't want to take medication all the time or have to rely on things like that. I will definitely look into the TENS machine, I also find the heat patches really good too.

I totally know what you mean about stress, I try and relax as much as I can but it's so difficult when all I can feel is pain but I still try.

I hope you had a good weekend and have a good week.

T xx