I asked a few questions on here a few months ago, about symptoms I have been having for many years. I'm 44 years old, and my symptoms became much worse early last year after coming off the combined pill.
The kind ladies on here agreed that my symptoms could well be endo, and advised I see my gp. My gp also thought it could well be, and tried me on a course of the mini-pill for 3 months, and when this didn't help, she referred me to my local hospital to see a gynecologist.
When I went to see the gyne, he was quite dismissive. He said it can't be endo as you don't get diagnosed with that at my age! I tried to explain that i had had symptoms most of my adult life, but they were worse after coming off the combined pill. He wouldn't even let me list my symptoms!!
He said that I'd had a transvaginal ultasound in March, and that had shown I have a thickened uterus. This is the first I had heard of this! He said he's 100% sure my symptoms are the Endometrial hyperplasia, and he gave me 3 months worth of Provera tablets. When I got home and researched this, I don't think my symptoms match this at all apart from heavy periods.
Was any of you ladies diagnosed at a later age?
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shar102
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Hi I was diagnosed at 38 after a possible miscarriage and failing to conceive. I had no symptoms prior to that and was never on the pill, so had nothing which might mask the symptoms. I think this is most peculiar, but as they don't really know the causes of Endo this was never explained. My consultant, who's amazing, says Endo has a will of it's own! Good luck - cause a fuss and hope you get your answers.
I've not been diagnosed but have many symptoms of endo, very heavy periods, pain in legs, bleeding from rectum during period, I could go on but you get the drift. I did see a dr about it in my mid 40's but she wouldn't refer me as she didn't think I would want to messed about down there at my age. So I still struggle month in month out, I'm now 50. I've had this since I was 11.
I have those symptoms Starfish, although my periods are that heavy, I've only been about 80% sure about bleeding from rectum (It's difficult to know exactly where It's coming from sorry tmi) I have to go back after 4 months, and was told if the provera doesn't work, he'd probably do a D&C. Would a D&C show if there was any endometriosis does anyone know? My problem is, I put up with things and don't go the Doctor's. I have other health problems so I'm used to chronic pain and now they think this is just a sudden thing - which It's not!
A D&C is where they scrape out the inside of your uterus. They would need to perform a laparoscopy (cut in the belly button, camera put in to look in the pelvic cavity) to see endo.
FWIW I was only recently diagnosed at 38 but have had problems since my first period at 13.
I was diagnosed at 47 after years of heavy painful periods and sharp pains in my right hand side. It was only when the pain got so bad that I could not walk that I thought there may be a problem!! I had a laparoscopy and hysteroscopy where endo (on everything), multiple fibroids, adenomyosis and a polyp were found. At no point did my gynae say I was too old, my periods are still as regular as clockwork and I have had no signs/symptoms of menopause.
I wasn't diagnosed until 42. Mainly as I'd never tried to have children as I was told if I had likely to have been picked up then as I wouldn't have conceived.
Do some research on adenomyosis as it could be that causing bulky uterus and some symptoms - it's when endo affects the muscle of uterus.
Unfortunately too many medics, general gynaes included, don't get endo at all. See if you get a referral to a bsge centre or at least a gynae at a bsge hospital as they can then refer you on. Good luck.
Thanks for the info everyone. I had CGIN too, which is pre-cancerous cells of the glandular cells of the cervix. I had to have yearly smears and a sweep of the womb for 10 years until last year. So when I got told I had a thickening of the womb, I put 2&2 together and have probably made 5. Stupid question, but would I ask my GP about referral to BSGE centre? I can see her fobbing me off, as she tried to do that when I first went in about this.
I agree with Marcia71 and have exactly the same symptoms and experience as you. I had a colposcopy and d&c in one day surgery procedure, and at the same op, they inserted my second Mirena.
I've never had a lap but was diagnosed privately with adenomyosis after a transvaginal and ultrasound scan. I have a super thick womb lining and a massive fibroid but the lining build up post d&c is controlled by the Mirena.
What I'm saying is that your gynae's diagnosis doesn't sound wrong but it's worth getting a second opinion.
When I say not wrong, I mean about your diagnosis not the age thing. The age thing has come about because most medical pros don't recognize the endo symptoms when you're seen in your teens and 20s.
I was diagnosed at 39, by a laparascopy (I'm now 61) . I had always had very bad period pains, but at that time (... largely) most GPs didn't mention Endo unless you were in their surgery, in agony, every week. As I didn't want children I had been on the pill for much of my adult life, and (like you) the Endo only became really bad when I stopped the pill, in my mid-30s, when my husband had a vasectomy - hence the lap at 39.
Also, while a transvaginal ultrasound can show some forms of endo, it cannot spot all of the types, and cannot see all of the pelvic cavity in the required detail. Recently, a radiographer could not even see my right ovary with a transvag scan ... so what chance of seeing the wall of the pelvic cavity beyond? Yet all this entire inner area does need checking, thoroughly, for endo.
A laparoscopy is the only method of finding and identifying all the forms of Endo, in all its hiding places. I would go back to your GP and request a referral to a different gynaecologist for an actual laparoscopy - and really, just an exploratory/diagnostic lap at first. Depending on the severity of any endo found, you may need referral to a BSGE Endo specialist clinic, and it's best if partial removal of end is not done first. BSGE Centres have the best endo people, with the best search, identifying and removal techniques and skills.
Talk to the advisors on 'Endo Uk' link at top of page, and also read around on here and find out as much as you can about Endo. I would also read the posts by 'Lindle' she has posted on here in the last few days, and also see her own Facebook Endo site. On this site, we cannot name Centres and Medics by name (Endo Uk is a charity and would lose its status). However, some Centres are better than others, so if you check Lindle's site, you can find the best options for your area.
Sadly, endo is one of those conditions where we all have to learn to be our own best experts. I hope this helps.
I was diagnosed 'by accident' when I was 38. I had also been going to docs for 15 years complaining of excessive pain (the just kept prescribing Ponstan/mefenamic acid tablets). I also had never conceived (and never used any contraception). The endometriosis often caused me bowel issues (although I had no idea at the time that this was the reason). The doc sent me for an ultra sound for my bowel issues but the nurse who did it said all was fine. It got to the point where I blacked out from pain related to my bowel and abdomen. So I was sent for another ultrasound privately this time. The specialist doing the ultrasound spotted that my uterus was thick or 'split' he called it. That was the first time I was diagnosed- despite 15 years of me going to GP about it! (I was then referred to a gynaecologist who did a laparoscopy but said that as I was diagnosed so late at 38 - the endometriosis had already got to stage 4 and there was too much to try and remove. He said that I would probably never be able to conceive either. I was devastated. I tried IVF - but of course it didn't work at that late stage of endometriosis.) I am now 43 and had an MRI scan a few months ago which confirmed that the endometriosis as progressed to ademyosis. I am waiting for a further appointment to discuss complete pelvic evacuation (but terrified as apparently it carries risk of 1in5 that a colostomy bag will be needed). I hope you get this sorted asap. Don't be afraid to change GPs or just insist for a referral. Best of luck.
Gosh, you've had a very difficult time of it I think it shows that we know our own body, and we should listen to it. I allow Doctor's to fob me off far too easily, as I said earlier, I am disabled with other health problems, and am that disillusioned with things that have happened in the past that it puts me off going for anything.
I do hope that things work out for you HiDee555, take care and message me if you ever need a chat. I might not be very knowledgeable (yet) but I'm a good listener x
It took me 12 years to be diagnosed. Go and get referred to a specialist centre. Lindle lists them on her posts.
Most drs don't know enough about it. X
Hi, I have just recently been diagnosed with stage 4 endo and I am 45. My periods had been a bit haphazard so I was sent for an ultrasound which confirmed a very large endometrioma on my right ovary. I had a laparoscopy with removal of endometrioma and hysteroscopy with d+c. I have always had very heavy, painful periods and now with hindsight the many health issues I have just put up with over the years and not sought medical help (despite being in the medical profession myself!!) have likely been endo related. I am now trying 3 months of prostap with a view to likely hysterectomy + removal of ovaries + endo excision.
So, the moral of that story is that I think at 44 you are definitely not too old to be confirmed as having endo.
Good luck in your pursuit of a diagnosis and keep well x
Hi I'm 41 and was officially diagnosed via laparoscopy in December. I had symptoms from puberty but believe my endo started to worsen in earnest after coming off a prolonged time on the combined contraceptive pill about 7 years ago. Your gynae is talking rubbish get your gp to re-refer you to a specialist endo centre bsge.org.uk/centre/
Hello. I was diagnosed at age 49. Your doctor is seriously misinformed. They thought my years of heavy bleeding, anemia, and painful periods was due to fibroids and, then later, possibly cancer. Was misdiagnosed for years, treated hormonally, and only when it got so bad that I couldn't function did they discover that I had fibroids, a benign cyst on my ovary, and endo everywhere (via laproscopic surgery). I went to so many doctors. Sorry to say, you may have to consult another doc. Good luck!
I want to thank you all very much, you've made me feel much better and more determined to push for a second opinion. I know I'm not a specialist and I don't want to diagnose myself, but when I googled my symptoms and endometreosis came up, It was like everything suddenly made sense. Problems I've been putting up with for years where listed. I felt like a hypochondriac who never went to the doctor's, but I'm not putting up with this any longer - life's too short x
I was diagnosed with moderate endometriosis 2 years ago aged 19. I have always had painful periods and pelvic pain, i went to see my gp when i was younger & he said i had ibs. It wasn't until I became sexually active aged 14 (I know that's so young but I'm still with the same person now 6 & a half years later & engaged 😀) that I thought something may of been wrong, sex hurt, I thought that my body just had to get used to intercourse but the pain continued. When i was 17 i was rushed into hospital with appendicitis. During the surgery the gynae said that they had found an 8cm dermoid cyst on my right ovary which they removed, they said it was lucky they found it when they did otherwise I would of had they have my right ovary removed. There was never any mention of endometriosis. After surgery the pelvic pain steadily got worse and a year later I went to see my gp to tell him about what was going on.
I'm very lucky compared to alot of women for my quick diagnosis. My gp asked me what I thought was wrong with me and I told him I think I've got endometriosis. He agreed to do swabs, if they were clear then he would send me for ultrasound, that came back clear so he referred me to gynaecology & the second I told him my symptoms he put me straight down for a laparoscopy.
I was diagnosed within 5 months of seeing my gp, I am so grateful that my diagnosis journey wasn't too much trouble,
I was just very confused that between having my appendix and cyst removed & no mention of endometriosis, that within a year it had smothered my insides?
I hope you're okay & can get some answers soon! Keep pushing hun & don't give up!💛💛
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sorry tmi) I have to go back after 4 months, and was told if the provera doesn't work, he'd probably do a D&C. Would a D&C show if there was any endometriosis does anyone know? My problem is, I put up with things and don't go the Doctor's. I have other health problems so I'm used to chronic pain and now they think this is just a sudden thing - which It's not!
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