ENDOMETRIOSIS

[tetti]

I was diagnosed with endometriosis,symptoms were masked by me being on the pill for years,then when I stopped taking it after splitting with my longterm partner,all hell broke lose!My pain was unbearable,and after several gp/hospital visits I was diagnosed with endometriosis.The dr put me on cerazette,a contraceptive,which stopped all the pain,BUT,the side effects were severe,I suffered the most terrible,horrendous moodswings (my personality changed completely,and I turned into a total monster,from having been a very happy and laid back person),severe adult acne,etc etc.So a few weeks ago I decided,without speaking to my GP,to stop taking it (read a thread on here and saw that so many other women has terrible experiences with taking cerazette).
Now the pain has come back big time,and I have to go back to my gp to see what other options there are (they prefer not carrying out any surgery if it can be avoided)
So my question is,if you also suffer this very painful condition,how do you deal with the symptoms? I want to be armed with as much info as possible before going back to my gp.xxx

I had endometriosis and a cyst. Nearly used to faint with the pain. As such I was operated on and haven't had any pain since (except usual period cramps). Why won't they operate? I had my surgery at 27 and am now 39 (and have just had my first baby). If you can't have surgery ask for some hard core pain killers (at one point I was on tablets that the give to arthritis suffers which helped quite a bit). Good luck.

hi, im 22 and have had pelvic imflam disease and polycystic ovaries..although tests were nt carried out due 2 me falling preg i suspect it ws wat u av... I ad it 4 2yrs and was told nothing cud b dne. My advice is 2 gt surgery. Pain and stres isnt worth it...keyhole is very routine nw. Ur in and out in half an hr. Hpe it wrks out 4 u hun x x

Hi, sorry you're going through this. I had severe endometriosis - had to have extensive surgery. The thing that is most useful to know is that the majority of doctors who deal with the condition (even gynaecologists) are not specialists in it and talk out of their arses don't give the most up-to-date information on treatment options. It is worth asking to be referred to a specialist who is capable of performing excisional surgery. Currently, excision is the gold standard - it has been shown to give very good relief. Unfortunately, a surprising number of gynaecologists seem to a) underestimate just how much of a problem the condition is to the women who suffer from it and b) genuinely don't seem to know that hormonal treatment and laser surgery (the more old fashioned type of surgical treatment) are out-performed by excision.
Most surgeons are still offering laser instead of excision, and, as laser doesn't really give much better relief than medication, they tend to take the line that they won't operate unless it becomes 'really necessary'.

There is a specialist centre at Basildon that (i think)accepts referrals from other areas, and one in Wakefield, but they will only accept from that NHS catchment area. There are a few others but off hand I don't know where.

I'm afraid it's unlikely to be 'in and out in half an hour', though - it can be very complex surgery and take a long time, but that depends on exactly what you need done.

Hope that helps.

I was diagnosed with this after 2 years of unbearable pain, a 1 week stay in hospital and god knows how many accident and emergency visits. In my experience the Nhs couldnt run a car boot sale let alone diagnose these types of problems accurately. I was told last year that id probably never conceive again and after 2 weeks of being ill and 2 doctors telling me it was a "viral infection" i found out im actually coming on 8 weeks pregnant!! the hormone therapy i was given did help slightly but i think if they had performed surgery id have been in less pain. Def campaign for the surgery as in the long term it will be more efficient for you!!!

Meant to add that most decent specialists are not likely to push you down the route of 'no surgery unless absolutely necessary' and are more likely to offer surgery as a first line of action, especially if you are a severe case, rather than putting you through a series of hormonal treatments that have severe side effects and often fail, and the good effects of which don't tend to outlast the length of the course of medication. They tend to recognise that there's no merit in delaying surgery until the woman's health is already destroyed, but that good surgical treatment can preserve a woman's health, gives good relief from pain and scores well on improving fertility.

You need surgery no two ways about it. I would campaign hard for this - many GPs to my mind are completely ignorant when it comes to endometriosis. Drug treatment won't touch endo on its own.

Also you need to find a specialist gynae (not the usual type) with both current knowledge and vast experience of treating endo patients. I would also agree that it can be very complex surgery - I believe I was in theatre for nearly 1 1/2 hours re my endometriosis (removed by laser).

www.endo.org.uk is a good website and has a helpline number you can call.

I found that on the NHS they wouldn't even do a laparoscopy, the minute I was private I saw the consultant again (after many a senior house officer etc) and was booked in for surgery for 1 weeks time!

Basically, like you, combined pill (given to me because I had painful periods) masked all the true symptoms. After 10 years on pill, blood pressure rocketed, took me off pill.

Went to GP, lovely female who suggested it might be endo. Saw consultant, confirmed endo. Started on pure progesterone (weight gain of 1 stone) no real relief and endo progressing, then they put me through a fake menopause at 27, was on HRT, it was hell, brought some relief.

Reassessed, endo still progressing despite meds, was now in private health scheme, booked for laser lap.

Told, what a big old mess it was in there, I'd probably need IVF for children, have baby right now, and lo and behold 2 weeks later I was pregnant!!!! Mainly because I had nuked my body with everything they would give me.

Have been on cerrazette since, I agree a fab pill but I had to choose pain over moody monster bitch from hell. At moment just coping on pain killers. But then I am lucky that it is just at ovulation time and period not every day like it used to be.

I changed my diet and lifestyle to help. I eat better and I am a SAHM as it is less stressful for me than working.

I had this before I had my DS, was causing me fertility problems. I had a laparoscopy then got pregnant. Do you have children? The docs say that pregnancy can be a good 'cure' for it although I'm pretty certain mine is back.

My doc was discussing things to stop my periods which are suppose to help like the coil or the implant rather than the pill.

Thank you so much for your replies everyone
I see a consultant at the hospital every 6 months,but he,and the other doctors I have spoken to say that they will only carry out a laparoscopy as a very last resort.
Just found out that the mother of one of the children I care for had a laparoscopy for her endo,and surgery twice,but she said that her endo ended up worse as a result,as more scar tissure formed.
Cerazette was fantastic at eliminating the endo pains,I was totally symptom free,but I simply cannot go back on those again,they turned me into a horrible person,and my moodswings affected my daughter as I was always VERY snappy and moody.She says I'm a totally different person now,and I feel so bad that I put her through all that,just because I was on that pill!
I was due to see the gynaecologist again this month,but my appt got changed,and it's now in Oct !
I have to see my GP again and have a chat about what else he can suggest.He is really good,I have to give him that.I'd been in pain and had these problems for so long,and he's the first dr ever to actually listen to me,he refered me immediately.
I have heard that sometimes diet,excercise and acupuncture may help eliviate some of the symptoms.I am willing to give anything a try,but am very wary now of using the pill again.Can't go on the combinedd pill as I get migraines.

sorry to hi-jack, does anyone know what the magical homeopathic pills are called for moodswings/pmt? I read about them on here and remember thinking that I must try it, but of course, me being me, forgot and now I am wondering what they are!

"I see a consultant at the hospital every 6 months,but he,and the other doctors I have spoken to say that they will only carry out a laparoscopy as a very last resort".

Hi Tetti,

Re the above comment of yours:-
I would ask to be referred to another hospital if the cons is like this. This is not helping you at all and is only delaying treatment.

Also I would state that you will need to see a gynae (not a general type one) who really knows an awful lot about endo, has treated endo as successfully as possible in terms of success rates - and has up to date knowledge.
Your gynae sounds bloody useless actually.

It sounds like the other woman whom you describe was dealt with by a non specialist in endo. You cannot get any old gynae to treat this, it needs specialist attention.

Hi you MUST go see an endo specialist fill stop, here's my story:

had severe pains every other month at time of period. Saw dr after nearly passing out at work - thought it must be something more than strong period pains.

Referred to a gyno, had scan there and then, diagnosed there and then booked in for a lap and "surgery" there and then...was told that I MUST have surgery otherwise it would spread everywhere so I just went ahead

10 days later has lap and "surgery" told all was ok and sent home next day

3 months later pain came back.

Went back to Drs who referred me back, whilst waiting for the appt did my home work, researched endo, went on the Uk site which is now my bible. Found by recommendation a surgeon in my area.

Saw him and found out that the surgeon who did the lap hadnt removed endo but opened area out and washed the area out!!!! My new consultant was shocked.

Was re scanned and endo still there, advised to try either - pain killers, Mirena coil, hormone treatment, or last resort excision surgery. Also recommended that I get re-scanned every 6 months

As endo on my ovaries they are very reluctant to remove due to damage and danger to remove, have opted for strong pain killers and touch wood so far 4 months on all is well - no pain.

All I can say is you must, must see a specialist my first surgeon I found out was a specialist in C Sections and fertility

My aquintance's consultant is a leading expert in his field in the UK,mine is also a specialised in the field,and to get a referal to another is almost impossible!(believe me,I have tried)

I started acupuncture and it was a strange experience mainly because on the first session I couldn't bend my knees or move my toes, person doing it said that my energy was trapped in my legs as it couldn't get past the endo!!!! Made sense.

I then went for laser lap and then pregnant so I only had 2 sessions of acupuncture at the time but I definitely would do it again. I have also tried reflexology, was nice but I can't say it helped me.

I also can't do the combined pill, I started on Dydrogesterone (Duphaston) which is pure progesterone and it did help a little but I piled on a stone in weight which was upsetting. You could try depro injections.

Check out the endo website as recommended above, helped me lots all those years ago.

a wheat free/ natural food diet is supposed to help, as gluten is supposed to aggravate endometriosis.

almost all doctors i've dealt with re:endometriosis have ben utter idiots. had it for 10 years until i diagnosed it myself after reading an article in a magazine. i demanded a laparoscopy to confirm and they wanted me to just go on the pill and bugger off.

my second laparoscopy with laser treatment helped hugely. didn't remove pain entirely but made a real improvement. have had two children since the laser treatment and that seems to have made a massive difference to how frequently i experience endo pain.

i wouldn't consider any hormonal treatment now, due to the side effects you mentioned in OP.

Would it be worth while paying for a private consultantion? I saw Mr Chan at the Priory Hospital Birmingham (he also works from the NHS QE hospital I believe). He was great - took all my concerns seriously and dealt with my endio/cyst straight away. My own GP just wouldn't believe how much pain I was in - it was only when I mentioned that I was in a private health scheme at work did he offer to book me to see a consultant. Don't give up - nag nag nag your GP for another opinion.