Older ladies

[shorty123]

Hi everyone, Am new here but wondered if anyone can help. Am aware that it is commonly younger women still menustrating who suffer with endo symptoms but i am 54 and suffering badly with the exact same symptoms. Leg pains started about 4 yrs ago progressing to severe lower abdominal, groin and leg pains in last year. My last proper period was about 2 years ago but in the last year have had 3 massive bleeds that took meds to stop the flow. Am losing time off work and feeling really low now. Have so far had scan on kidneys, back scan and rectal exam. Also had a womb biopsy after each bleed - each time clear but with a poylp removed on one occassion. Am waiting for a pelvic scan but not expecting miracles. Have tried to talk to GP and consultant about endo but they won't take it on board because of my age. Is there anyone out there in similar circumstances - it might just save me from going mad!!!

I feel so sorry for you all when i read your stories - i wish i could wave a magic wand

for everyone xx

[jojo777]

Hi

I dont think I can help a lot as I am 32 and already diagnosed with endo, but your symptoms are quite typical for endo or something similar.

If the pain is affecting your life you should push your gynae for investigation, if you are willing to do a lap then this could be the only accurate way to find out whats wrong in the area. If your body still produces some oestrogen then it could be endo.

Good luck

Jo x

[marshmellow1]

I don't like Drs terms! You aren't too old at all, there is always an excuse for expense, everyone should be helped, I hate that it all comes down to money!

I think if your Gaeny won't do the investigation, go back to your GP and tell them your stuggling, it does sound like the typical symptoms of endo,

You need it sorted if they won't help you ask if your GP if they can refer you to a different Gaeny maybe in a different hospital if you have already been to the ones in the hospital that has refused you.

I had lots of ultra sounds, x-rays, even a laprotomy and they found nothing! And when they finally went in laparoscopy found endo 4 and everything stuck togetherwith adhesions.

I was told each time they go in for surgery you have a bigger chance of more and more adhesions so don't let them fob you off lovely, try to incorporate the diet into your life style to try and help your symptoms ease.

Let us know how you get on, hopefully you will get someone that will listen to you

X x x

[pjag]

Google adenomyosis, a common condition in middle aged ladies caused by oestrogen dominance where endometrial tissue buries itself in the walls of the uterus. I am 48 and suffering similar symptoms, an MRI scan confirmed the problem.

[aprilgirl]

Hi, I am not sure if this will help, but I am 68 years old and still suffer from certain symptoms of endo. I, like you have been told by my GP that at my age I cannot possibly have symptoms still from endo. but I know I have, after suffering since I was 41 with problems. I know all the dufficulties that come with this horrible illness. 10 months after having a hysterectomy I started to bleed again every month, after tests I was told that during the op. a small bit of my womb lining had escaped and grown into a large lump, attached to my rectum. I was given a drug called Danazol, which helped reduce the size of lump, which at the start was about the size of a melon. Everytime I left off the drug the lump would grow rapidly again. at the age of 56 when there was still no sign of menapause my Gyneacologist had my hormone levels tested and found that I had the levels of a nineteen year old.!!!! Finaly I had a menapause which lasted about four years, but when stressed I still feel discomfort in my abdomen on a monthly basis, I feel that my body is still in sort sort of cycle still and every now and then return to weeks of hot flushes etc. I know this lump is still there as I can feel it sometimes when sitting on a hard chair. When I was bleeding from this lump the pain was pretty bad and I was given 100mg of Voltarol Retard once a day which was a great help to me, the pain sometimes was excrutiating. now it is just a dull ache. At the time I had a wonderful gyneacologist who helped me a lot. I feel now my GP does not understand and because I do not fit into the general run of things, thinks I must be imagining it. I feel the people who suffer most from this illness are those who have had high hormones all their life and didn't know it, but have had all sorts of problems such as painfull periods and difficulty in conceiving as I did. We older women who have been through a lot have to try and treat ourselves if possible, especially when GPs are getting younger each day.

[Juleyanne]

You are certainly not alone, I am 53 and menopausal (8 months since last menstruation) with a horrible history of endometriosis and apparently equalled by the effects of dreaded adhesions (scar tissue that forms due to endo lesions and after each surgery and sticks adjacent organs together like cooked cold spagetti. I was symptomatic for years and had various investigations over the last 20 years or so it was only in 2002 that it was first picked up after changing hospitals, consultants

as I was getting nowhere and living in pain with accompanying bowel, bladder, right pinching, groin/hip pain, urinary urgency, painful periods, piles, low back pain and clothing round my waist however loose seemed to dig in and hurt where it was eventually found I had loads of endo and adhesions! It was found during removal of a damaged fallopian tube and later a 3 or 4 line letter from hospital scantily mentioned - everything was normal, endometriosis found in tube! I was told nothing more and didn't even know what endometriosis was or how it can basically wreck you life.

Slight relief but pain soon returned and more years went by going back and forth from GP to Consultant. I was given anti depressants, told I had IBS, then later had blue dye put through remaining tube and lo and behold that was blocked too, so that tube was removed too. Luckily, I was not maternal but I remember sharing a ward with pregnant women and feeling like I had suddenly become an 'it', and feeling overwhelmingly sad. Time went by and all sorts of diagnosis was suggested Fibroids due to thickening of the womb, cysts (one was found) at least two ultrasounds and one picked up deposits of what they thought might be endo and/or adhesions so they ordered a laparoscopy and hysteroscopy which was supposed to be a day case and because they 'took the top off a hornets nest'! they soon realised I was riddled with it! in my left pelvis, right pelvis and it had travelled into my stomach round belly button! Because I had previous surgery which just removed tubes in two ops plus forgot the say years before had an ectopic, all the surgery I had undergone had obviously not looked further and left endo there which had spread like a 'forest fire' through my abdomen! Plus because of endo lesions and trauma of surgeries scar tissue adhesions had stuck ovary to bowel and fallopian tube stump to bowel the other side - a right mess!

I was kept in for days in a private room as I was so ill, that pain I will never forget! After I was over the moon 'no pain for first time in years' but it didn't last long it crept back! They tried Mirena coil, Zoladex injections in stomach to send me into pseudo menopause to reduce oestrogen feeding it plus Tibolone HRT synthetic you name it. Anyway, the Gyne then said it might be muscular skeletal and told me I had a prolapse. I later had a CT scan which picked up Diverculitis Disease and small Hiatus Hernia to add to my problems. Because I get constant pinching right sided and hip and groin pain and bowel, bladder problems plus low back pain, often feel sick and wake early was agonising pelvic and stomach pain the other suggestion was a Bilateral Salpingo Oopherectomy (radical hysterectomy). I have varying advice about this, one Gp quitely warned me it could make adhesions worse and don't go there, another said 'go for it' it might be the answer. I am of course terrified and confused what to do next! As said earlier I am now in menopause and because Zoladex didn't work for me they said that suggested Adhesions where more likely to be the problem now. I am 53 turning 54 as said, from what I've researched myself it appears endo can in some cases continue after menopause but obviously as oestrogen drops the endo has nothing the feed off but according to a complicated gyne student site I visited oestrogen can hang about after menopause in a diluted form and still present problems plus the endo there does not just magically go the lesions can continue to rub against other organs causing pain along with scar tissue causing tugging and nerve pain. There are so many organs in women in one place even as I find, if I have a full bladder or bowel the pain is worse ie first thing in the morning or even during the night which I can only assume is adhesions pulling or rubbing and accompanying nerve pain. As to the endo

being the sole cause well that is debatable but not impossible. You are way more likely to be having problems with established endo, adhesions, nerve pain, at 54 you are highly unlikely to have any new endo as oestrogen can no longer feed new deposits. Anyway, sorry such a long comment

but in a nutshell no you are not alone as an older lady.

[shorty123]

Thank you everyone. After just being through the most horrendous 3 days in the last 4 years your comments have at least made me feel that i am not going mad. On at least 2 occassions Doctors have implied that its probably all in my head. Trouble is when your not feeling great you are not in a position to stand up for yourself. I have been trying to decide whether to pay privately for a laparoscopy if thats the only way i can get it. Time to start selling stuff on e bay i think!!!

Your feedback has given me lots to think about which thankfully i can do today as feeling back in the real world today. I am always amazed at how you can feel ok one day with enthusiam for living, then its such a contrast to be in so much pain and feel so low another day.

I feel so sorry for all you women who have been suffering for such a long time and frustrated that the medical profession just don't listen to us - the experts on our own bodies.

[zazzy_113]

Hi I went to sera private consultant yesterday he was very good endo clinic in Birmingham he said he would do my treatments on nhs. His main focus is endro so maybe get second opinion

[LadyNB]

Hi

I do like all the ladies have to say.

Endometriosis is not a child bearing disease. My best way of describing it is. It acts like acne, it pops open and spider webs. I have been suffering with it since the age of 11. I will be 60 next month, and still having problems. I had a total hysterectomy 10 years ago. I am still having the pain. Pain sometimes goes down my leg. I have crippling pain. I have felt bands snapping inside of me. I was sick for 3 months or more from that. Then it has caused me back problems since (nerve damage). Yes, and it is probably adhesion. I did have a surgeon tell me 23 years ago, when an ovary was removed, I would suffer problems for the rest of my life. And he was right. But. He didn't tell me at the time I had a disease, endometriosis. He knew it. Endometriosis, does not discriminate with age. I am now struggling to get help. These Doctors don't understand it, so they don't want to deal with it or help me. So as far as the age goes, yes, the Medical fields do discriminate, as far as I feel.

Don't stop trying to get yourself help. There is some one out that can help you, It's the matter of finding that one person. They are out there.

[shorty123]

Hi thanks for that. I am so sorry to hear your story. Maybe the answer is to train as Doctors and treat ourselves. Last week i asked my consultant whether she would make me a referral for a private laparoscopy but she will not again because she thinks i'm too old to suffer with endo but what no one has taken into account is that the symptoms haven't just started - i've had them for about 5 years which was before menopause started anyway. Got much much worse over last year but again no one has taken into account the 3 big bleeds i had earlier in year. There was only 1 professional i've spoken to who was willing to think outside the box and she left to go elsewhere soon after i saw her. Consultant says if i want private referral will have to back to GP which is kind of where i started. I am absolutely certain that the scan i'm waiting for (another 2 months gone out of my life!!) will not show anything as on previous ones. To me the logical reason for that is because whatever the problem is it dosen't show up on ordinary scans - hence endo? Seems a perfectly logical avenue to explore to me. I would rather be proven wrong than not get the chance to have some treatment and try to feel better!

I am a nurse myself and have to say i am now ashamed that i am part of this system. I only hope that over the years i have been kind, caring and proactive in improving peoples lives - not obstructive, self opinionated and pompus as so far has been my misfortune in the doctors/consultants i've met.

Am off to see a chinese herbalist next week having done the rounds of acupuncture, massage, laser therapy, cranial therapy and hypotherapy. clutching at straws maybe but what the hell.....

Have you got someone good dealing with you now?