Endometriosis/adenomyosis in your 40's

[Slinks]

Is it possible to develop both these in your 40's. Ive been in severe pain around my pelvic area for a few years now, backwards and forwards to GP, numerous swabs, examinations and ultrasounds and all clear. Went back to GP today and won't even refer me back to gynecology and said it can't be either of these conditions at my age. It goes on

[Shay30]

Hey 💕I would ask for a second opinion that is unfair to be told that without further investigation I’m 38 in August and I have been in so much pain for years and only got my op on Tuesday to be told the endo was wrapped around ovaries…so put your foot down with your doctors xxx

[Slinks in reply to Shay30]

It's so hard though they just won't have it with me. I'm 46 almost 47 and also going through perimenopause aswell but this isn't normal. At one point she said it could all be in my head. Feel so deflated x

[Hidden]

I'm so sorry that they've done this to you. I was diagnosed in November, confirmation by MRI in January. I am 46. I would push for a second opinion, my GP has been so supportive but I did have to book monthly appointments sep/Oct and November stating the same symptoms so I guess they figured I'd keep coming back unless I was offered a scan!

[Bondi64]

i got diagnosed at 38 so dont be fobbed off! Ask to see a gyne. I was on the pill practically my whole life which must have masked alot of pain and only started to see the pain i. late 30’s

Its your body and you know what doesnt feel right- sod the GP. Push to see someone

[Slinks]

Can I ask what your symptoms were?

[Hidden in reply to Slinks]

My symptoms? Firstly it was extreme pain in my right side, fobbed off with antibiotics for UTI. Deep ache in my lower back. Massive monthly bleeding and inter period bleeding after having fairly manageable periods upto now. I assumed I was perimenopausal, but the pain was unmanageable so I had a us in November they found a cyst. Referral and ca125 tests done (slightly raised nothing major) MRI ordered for January. Saw gyn in Feb said endometrioma and endometriosis behind my uturus seen on scans so waiting for gyn to decide when they can operate. Wait could be a long time but I have access to better pain meds and have been offered mirina while I wait.

[AllthatGlitters]

hi I was diagnosed with endometriosis and adenomyosis aged 35 and I am now 41 and it doesn’t get any easier - I would change your GP to one that is going to support you, it’s terrible you aren’t being listened to. You need a laparoscopy to check for endometriosis and an MRI to check for adenomyosis. I had scans (ultrasound) which showed up nothing. It was only through the lap and MRI I got diagnosed x

[Tricky19]

Hi, I was diagnosed at 50 with endometriosis stage 4, DIE and bilateral endometriomas. I had no idea I had any of this, until a visit or A&E due to a flare I had from nowhere, in my case was so obvious that they saw it straight away. So yes, you can have this at your age, maybe you had it “asymptomatic” as I do. I now know other issues I had throughout my life were due to this illness, but I have not had the tipical ones.

Go back to the GP and ask them to refer you, so the specialist can tell you if it is or not.

[Slinks in reply to Tricky19]

Thinking back ive always on and off gone to GP with bad periods and pain its just these last few years the pain has become near on unbearable and constant. There's been a few times lately I've considered going to A&E but just about managed to ride it out

[SS10]

I was diagnosed at 47, I honestly think mine started in my 30’s after having my boys via caesarean. I was in a lot of pain on my left and if it wasn’t for my amazing GP who pushed for scans and bloods, I would never have known. I have had 2 laparoscopic procedures since and hopefully it’s gone now. Mine was stage 4 bowel endo and awful! Push for another consult, and if you are fortunate to have private healthcare, try that way xx

[Slinks in reply to SS10]

No private health care unfortunately. Ive suffered with my periods all my life but not had pain like this

[SS10 in reply to Slinks]

that’s how I was, keep pushing hon as my CA125 levels weren’t that high but the endo was everywhere! X

[JS1001 in reply to SS10]

Hi! Can I ask if you had severe symptoms of endo before diagnosis?I have some dull pain on my lower left and ca125 of 50. My doctor suggested endo but so far scans have been clear, no cysts or anything.

[SS10 in reply to JS1001]

Hey, apologies for the delay, I had abdominal pain and whenever I ovulated on the left ovary, the pain was awful, some days the pain would go down into my groin and I wanted to punch the pain away. It wasn’t till I had an mri that they saw that I was riddled on that side. I think mine came after my boys were born as I didn’t really suffer before that. My CA levels were similar to yours but my endo was stage 4. I would see if you can push for an mri, I’ve had 2 laps now and no longer have an ovary or Fallopian tube on my left side and it’s made a huge difference. Hope that helps x

[Sheep2]

Hi, I was diagnosed at age 44. Symptoms were severe pain, particularly in my lower back. Gp kept testing for urine infections. It's only when my blood test came back with low iron due to heavy periods that I was sent for a scan. I'd see a different Dr if I were you. X

[Avourneen]

I was diagnosed at 42. I think I had had endo all my life but it had spread badly and was causing so much pain I struggled to walk to work and had terrible pain in my back and ovaries. My sisiter had been diangnosed a fe years earlier and I went to the GP (who had been telling me it was IBS /stress etc) and told him he had to refer me. I did I had a scan and I have very bad stage 4 endo. It is completey normal for endo not to be picked up until late 30s 40s because GPs fob women off for years on end.

I would suggest you get a scan privately so you don't have to wait and either see a different GP at the same practice or just book a private gynae app (you don't always need a referrel)and cut this clown out of the loop of people you will have to deal with.

It makes me so angry that these GPs are paid massive salaries and refuse to help women and instead spend their time gaslighting and delaying diagnosis. I know many GPs are great but there are sadly a lot like yours, why they think every patient is a making up their symptoms I just don't know.

Get a different doctor and continue to push for proper tests and diagnosis. A GP is not qualified to diagnose whether you have endo or not.

[Ruby1221]

I was diagnosed last year with adenomyosis!

I’m 55

[bluebug]

I was diagnosed with adenomyosis at 43. I had it pointed out at 16 by a couple of my lovely classmates that I was having period "issues" and should really see a doctor.

I basically gave up after spending 20 years of trying to get a GP to listened to me. Then realised since I had changed practices I had not tried any of the GPs at my current one.

I was diagnosed by ultrasound before I was referred to any gynecologists. (First horrid, second lovely. Both women. )

Due to the lack of qualified sonographers around the country you should ask to be for an MRI. (A poster called Lindle has written some useful posts about imaging.)

[Niffer78]

Diagnosed last December, with endometriosis, 4cm cysts on both ovaries, adenomyosis and fibrotic plaque in pouch of Douglas after ultrasound and MRI. I've been offered surgical management and/or mirena coil.

I'm 44, so definitely escalate this. My symptoms were incredibly heavy periods, inter cycle bleeding, irregularity and severe pain. I had a gradual increase in symptoms, so suspect this had been an issue for a while.

I'd also been on the pill for a long time, and I can trace back the changes to a month after stopping the pill! So maybe that was masking symptoms.

Ask for a second opinion/different Dr, or start the formal complaints process (every NHS provider, including GPs has to have a formal complaints procedure) and I hope you get some better care soon.

If you are in a position to arrange a scan for yourself privately, then I would recommend that. You can still refer back to the NHS for treatment, with the results of a private scan. X

[Slinks in reply to Niffer78]

Unfortunately not in a position to go private. After yesterday's appointment I have put a formal complaint in to NHS England. I went from being upset to really fuming. My symptoms are. Escalating massively now although it's more the pain for me at the moment, periods aren't that heavy but very irregular but is that just perimenopause

[slinky00]

I was diagnosed with Adenomyosis just before my 40th birthday, fertility doc saw a fanning on my US and referred me for MRI where it was confirmed. It can be very difficult to see on US so need an MRI. Extensive global throughout uterus. I've suffered with it for years and no GP listened to me. It was only when I decided to pay for private treatment it was found.

I'm sorry you've suffered for so long 😔 and had no support. I agree with comments here to change GP. I don't think agree related and you could have been sitting with this for years.

[Slinks]

Rang GP and complained ive got the referral to gynecology finally now I just have to deal with them. They were crap last time I went and said it couldn't be endometriosis. Trying to learn as much as I can so go prepared

[Pennyheart1]

I am 40 and was fobbed off for years with ridiculously heavy periods by doctors saying that I was unlucky and that it can happen after you’ve had children as your uterus can be stretched!! It was only after having a miscarriage 18 months ago that they found a big endo cyst… which led to an mri which confirmed cyst and further endo, fibroids and ademonyosis, and last Monday, surgery.

Sadly it took loosing my baby to bring me my diagnosis.

I do feel really upset that doctors don’t have more training in this area to determine the differences. It can be such a life controlling condition.

Hope that you get all the help you need.

[Slinks in reply to Pennyheart1]

I've had 2 miscarriages, 1 in my late 20's then another when I was 38. Luckily 2 children aswell. Whatever it is, although I suspect endo, it is controlling my life and getting worse

[Pennyheart1 in reply to Slinks]

Am sorry to hear of your loss too. I too have children and feel even more blessed to have them through all of this.

Hold in there - if your pain is causing you to be on here and it’s affecting your life it is a medical problem!! I guess you need to push so that they start to give you options so that you can work towards feeling better. Maybe an MRI..

[Slinks in reply to Pennyheart1]

It definitely is effecting mine and more poor husbands life its awful. Thinking back ive always struggled with my periods apart from when I was on the pill but I can remember going to doctors in my early 30's with bad periods and pains. Nothing like this though. This bout seems worse and going on longer but my period was due Tuesday and still hasn't arrived so been in agony now since last weekend. Currently 31 days since my last. Feels worse I think because there's no release. MRI is what I'm going to try and push for and if they refuse I will keep complaining to the appropriate department its not on.

[Moon_maiden]

I was diagnosed at 51, so your GP is talking rubbish. Probably had it most of my life but put up with it.

Go back and insist on a referral. I ended up paying to see Gynae, I’d gone about fibroids but left with Endo diagnosis 🤷‍♀️🤦‍♀️ And confirmed with op. Endo didn’t really show on any scan but was extensive and more fibroids than showed on scan as well.

Good luck, it’s a tough fight but be strong 🙂

[LCVF]

It sounds like you need a second opinion. I had an ovarian cyst surgically removed at 41 and the surgeon said my pelvic area was "riddled" with endometriosis. That was the only way I knew. Had had many ultrasounds for cysts and it was never mentioned, and asked for pain killers for debilitating cramps and never really got any help. I was able to improve the pain through diet. I think the reason it can get worse and worse is because the liver can be clogged with estrogen. Doing what you can to shed excess estrogen seems like the best long term solution to me but I am not an expert.

[Ruby1221]

yes. I’m 55 was diagnosed with adenomyosis last year