I have endometriosis.I was daginozed at 25 after following the usual routes,taking several types of the pill back to back etc.Have had to laproscopes with laser and a mirena coil each time it has returned.This time it has returned in just under 2 years with the mirena fitted.It has effected my bowels,back,and pelvic area and this time constant water infections too.The other week I nearly died as I collapsed due to severe pain and choked on my vomit whilst unconcious.Luckily my husband was there and got me an ambulance,I then spent a week in hospital.I am now on the injections to stop everything working plus hrt,I can only have these for 6month meanwhile I long ago decided I wanted a hysterectomy,but had mirena literally forced on me!My worry is the doctors won,t give me a hysterectomy this time as they have said no kids etc but have been told I would find it very hard if not impossible to conceive.Are there any guidelines for this agewise?I am very scared and want the pain to stop.I am due to see consultant in june for a decesion ,please help.
Will i get a hysterectomy at 35 with no k... - Endometriosis UK
hey littlestar, im gill hope you dont mind me messaging. my symptoms are pretty identical to yours - ive had 6 laparoscopies, one of which i had to travel to a hospital 30 miles away as it has a different type of laser (that didnt work either), i have constant uti's, endo has atacked my bladder and bowel also. my gynae has banged on aabout fitting me with the mirena for many years now and i refuse it constantly to the point i asked my gynae if she had to fit a certain number of these per year as she clearly wasnt taking any note of my refusal!! i was also offered the option of a drug induced menopause for 6 months which i also refused, ive asked for a hysterectomy at my lowest points when i feel i cant cope with the pain any longer which the gynae refused on acount of my age (31) and the fact i have no children, my argument was whats the point of having reproductive organs that are damaged by endo and stop me from having a family but no they just want to do the menopause thing or the coil - what isthe point really??? anyway, i demanded an appointment with my local assisted conception unit, im now next on the list for donor sperm as ive long since split with my ex, basically what im trying to say is, there is hope so dont go diving in for a hysterectomy if its kids you really want. im proof that if you argue, demand and basically take a toddler tantrum you will get further options :).
hope this helps a bit xx
Hi Littlestar. I've just undergone a radical hysterectomy at the age of 38. I have no children but my husband and I have always been sure that was the right decision for us. My Consultant was excellent and told me that offering me a hysterectomy at 38 was an 'unreasonable option'. My husband and I are also of the opinion that if we decide we want a family, there is always the option of fostering or adoption, I don't believe 'having a baby' is the only option to having a family.
The medical profession are obviously cautious about offering hysterectomies to young women where conception is still an option, but as you point out, there are no guarantees that you would fall pregnant if the endo is so severe and you are clearly not 'living' your life at present.
You are well within your rights as a patient to ask for a second opinion via your GP. They can refer you on to someone else. I don't know where you are in the country, I am in the South and cannot recommend my Cons who is based at the Royal Surrey County Hospital in Guildford any more strongly. He (and his team) have been excellent. His name is Mr Peter Barton Smith.
Hope this all helps with what is obviously a very difficult time. xx
Possibly one of the reasons why they are reluctant to perform major surgery on you with all of its inherent risks is that hysterectomy does not cure endometriosis. At your age, you would have to have HRT to stop your bones crumbling and unless you are extremely lucky the endo will come back. You could quite easily find yourself back in exactly the same amount of pain within a couple of years or sooner.
The injections - yes, you can only take them for 6 months at a time, but once you've had 6 months off them, you can take them again for another 6 months.
Also - have they referred you to a pain clinic yet? Your GP can do this, you don't have to wait until you see the consultant
I know that when you are in pain and scared it sounds like they are just fobbing you off, but they're really not. Hysterectomy is really not the answer to everything and it could cause more problems than it solves, and you don't want that
I hope you find something that works for you x
Hi I had a total hysterectomy at 36 with no kids, I told them that I had no quality of life. My consultant said I had endometriosis to be proud of. I don't regret it it stopped the horrible periods and pain I'd had since aged 12 and to a certain point I got a better quality of life but because of adhesions and scar tissue I'm still in pain unfortunately. it's a big decision, I hope what ever you choose works out for you too x
I am 35 and having a Hystorectomy on the 28th Jan 2013. I have suffered from pain since my periods started at 9 years old and now have stage 5 endometriosis.
I was diagnosed with Endo at 23 when rushed into hospital to have a large cyst and filopian tube removed which was crushed and was also told I had fibroids (the consultant who completed the operation told me that I would never have children then). I've had a number of further surgeries and 4 rounds of Zoledex over the years. I also take Proxac to help with the PMS as the PMS makes me feel suicidal over the years and poor quality of life ect it's helps but not a cure.
I went privatley for a consultation with another NHS consultant as felt my consultant was useless and believe me you get the full hour you deserve rather than being pushed out the door in 10mins and told that your just another neurotic female. I requested to be referred back to the private consultant on the NHS and then agreed to see a fertility specialist in the same department, I was then referred to centre of life for IVF.
The IVF was awful made me into a complete idiot and ultimatley did not work too much scar tissue to produce eggs. I had one course of IVF and the professor from the centre agreed it was too dangerous and a waste of my time to continue and her professional opinion she suggested total pelvic clearance. I've got cysts on bother ovaries, a swollen remaining tube and the pelvis is destorted so that was that.
I went back to consultant who agreed that if I had the IVF and it did not work he would complete the hystorectomy and he then tried to get out of it! offered me another round of Zoledex and more surgery. I declined the surgery and further treatments and to cut a long story short my GP sent the consultant a letter advising I was not happy and stated my concern that if a professor or fertility was agreeing I needed the op then further treament is a complete waste of time. I got an immediate appointment within 3 weeks and a panel of three consultants agreed the hystorectomy.
I understand completely your frustrations so you may want to speak to your GP to send your consultant a letter expressing your concerns. If you agree a course of IVF treatment that may also help as ultimatley that is what swung the operation in my favour as they could not argue with a fertility specialist agreeing I needed a hystorectomy.
Sadly a hysterectomy is not a cure - you would need a total hyst including removal of both ovaries and every trace of endo at the same time. Then you'd have to decide whether to take HRT to prevent osteoporosis and cancer, but the HRT can trigger the endo again. Some women are lucky and it stays away - for others, a hyst ruins their lives because the endo returns and is much harder to treat. You're also likely to get severe adhesions.
I went on zoladex at 25. It worked so well for me initially when nothing else did, so my specialist gave me permission to stay on it indefinitely. Sadly it stopped working as well after 18 months so I stopped it after two years - I've had ongoing side effects ever since but I didn't take the HRT so I think it's my fault. If you're thinking of having a hyst, staying on zoladex longterm would be preferable as at least it's reversible if there's a problem.
Based on what I've seen and who I've spoken to over the last ten years, I would never have a hyst. So many of our symptoms are caused by other things (endo in other places, nerve damage) that it doesn't necessarily deal with most of the problems, and I'd be terrified of ending up worse off and it being permanent. I can no longer work and an on 600mg of morphine a day, but I know that my nerves are sending pain signal even without stimulus and no surgery will change that - even in the state I'm in, where I would try most anything, I wouldn't even entertain the idea.
Look into longterm zoladex - it's only endo that has a 6 month limit, there's no such limit when it's used for other illnesses. Something that can be stopped is better than something that can't be put back!
Alternatively, you might find that a 6 month course shrinks the disease and gives you relief for a year or so after - so you could get by on a course of zoladex every couple of years rather than constant.