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Anyone want to join me on an Endometriosis and/or other menstrual disorders support thread?

(47 Posts)
DrRanj Wed 09-Jan-13 09:33:39

Got a consultant's apt later this month, still getting pain despite lap for endo last year, and I'm a bit anxious about it!

I know there are a few of us out there so would be nice if there was a thread for us to vent on! There are other forums out there I know, but I like mumsnet so it would be nice if we were all in one place on here

I'm wondering whether it's better to start it here or in infertility, as the two can go hand to hand, though not always I suppose...

piratecat Wed 03-Jul-13 20:00:13

thankyou Attila for sharing.

did you have pain inbetween periods? dd had had this on one occasion, about day 48. but this was switching from one pill to another and she had had no break.

her only other pain with no bleed was the hemorrhagic cyst.

nothing touches the pain during her period.

not every period has been agony. x but most have.

orangeflutie

I would be asking your GP to refer you back to the gynae team who treated you initially.

Endo can recur post surgery; the pain you're getting now may well be from endometriosis or adhesions. Drug treatment on its own will not touch adhesions; the usual way these are removed is via surgery.

piratecat

Am very sorry to read of your DDs problems. Am no expert but I would think endometriosis is the root cause of her problems here. My endo I now realise started at 14 at onset of menses.

Would suggest that a daily pain and symptom diary is kept, note every symptom (any symptom that is cyclical in nature and gets worse up to and including menses could well be down to endometriosis).

The gynae consultant you end up seeing should ideally have a specialist interest in endo (ask!) along with lots of experience in dealing with such cases; you really do not want a general gynae dealing with this. They will likely suggest that she has a laparoscopy done (this is keyhole surgery).

www.endo.org.uk is a good website.

orangeflutie Wed 03-Jul-13 15:40:53

Sorry posted too early. Pirate cat your dd is so young to have so much painhmm I don't know what advice to give really other than to keep pushing for answers. The endo website recommended further up thread is a good source of advice and support.

orangeflutie Wed 03-Jul-13 15:22:02

Hi everyone

Glad to see this thread is back again. I was diagnosed with endometriosis at the relatively late age of 41.

I've had endometrial ablation, 3 cysts removed and at my last op I also chose to have my left ovary removed. I'm now battling with ongoing pain that has crept back over the last few months. I'm not sure whether it's more endo that has grown back or adhesions from the different surgeries. My doctor has tried a few things but isn't sure whether the pain is from my back or not so has referred me for physio. I'm currently on painkillers until the appointment comes through, am also worried because I suspect it's endo or adhesions and am not sure whether it would have been better to have been referred to gynae confused

Bellybadge It's understandable you're a bit upset at losing an ovary esp as it was all very sudden and unexpected. I chose to lose mine and still feel a little sad even though it just seemed to produce cysts.

Endometriosis seems particularly cruel in that often others don't realise what you're going through.

piratecat Wed 03-Jul-13 10:51:54

hello ladies. i am interested to see this thread today. Also very sorry for the distress and pain this is causing you.

My dd is 11, and we will be going to the gynae people at our local hospital to get her checked out.

history.
started af at 9yrs.10 mths, very bad pains. missed school as could not function.

has been prescribed every pain killer.

Has had terrible pains mid cycle.

Last June suffered 2 weeks of pain, gp crap. This was with no bleeding, and i took her to a&e. Discovered a hemorrhaged ovary that had grown about 3 times it's normal size. So hormones were all over the place.

Nearly faced surgery to remove it but it was down.

Has been put on 3 different contraceptivepills, and I would say that 8/10 of her periods have been very painful despite this. Much missed school.

Last year i mentioned cysts on ovaries (last resort) and the gp poo poo'd me. But i was right. it was an ovary problem.

I took dd to gp yesterday to ask for a referral. Yet i am unclear what would be done test wise. As far as i have read the only thing to test if suspected is a laparoscopy. ? She's still in primary. Has had 19 days off school since January for period pain.

any advice, about what we can expect very grateful thank you xx

Bellybadge Wed 03-Jul-13 10:39:43

tiredmule That totally makes sense. I am feeling a little better each day, they didn't do a lap but a more traditional op, cutting from the belly button down. The first week after the op I felt the worst I have ever felt, just sore, achey, burning sensation on the incision and around my tummy. I had no idea I had endo as pre kids I never had excessively heavy periods or strong pains.

The thought of a full hysterectomy scares me witless as I never been operated on before this op and the recovery and aftercare has been less than ideal. I think I'm still in shock. Forgot to mention they took my right ovary at the same time they removed my cyst. I feel a bit sad about that, I know it sounds stupid to be sad about an ovary, but I can't help it.

The thought of the Zoladex fills me with dread too. It seems pretty much everything they recommended comes with it own set of not v nice side effects.

TiredMule Wed 03-Jul-13 09:51:51

hmm Belly, that sounds nasty. How are you now? Did you have any idea before they found the cyst? I hope you make a speedy recovery and your symptoms improve.

Part of me is worried if they find endo and worried if they don't.....I don't know if that even makes any sense!

Bellybadge Wed 03-Jul-13 09:36:07

Hi, I'm so glad to have found this thread. Recently diagnosed with endo, have 2 dc and looking back my symptoms started properly after the birth of my first child. Heavy bleeding, back pain, constipation and diarrhoea around the week leading up to my period.

The last 2 weeks I was doubled over in pain and was sent for ultrasound which showed a cyst, they operated to remove the cyst which they said was a 15cm chocolate cyst. Consultant said the endo was stage/grade 4, and everything was stuck together. Zoladex was suggested for 9 months but have been told that a hysterectomy is the only way to get rid of the endo and stop more forming.

TiredMule Wed 03-Jul-13 04:54:35

Whoops-sorry for the typos blush

TiredMule Wed 03-Jul-13 04:53:53

Hi Potterer and Attila, thanks for replying. My gp was great and referred me straight to the endometriosis clinic (turns out this might be because another of her patients, a mum I know from school, was diagnosed a couple of years ago after years and years, and the gp had kept saying nothing was wrong, so she apologised and then has been on several courses!)
So I went to the appointment and saw a very moody gynae, who said she thinks its likely I have it, but tried to fob me off with trying the pill for a while, rather than the laperoscopy, which I ignored! I have the op booked for the 30th July. The last couple of months I've been a bit better but I'm currently awake in agony so I know I'm doing the right thing.
My pain now is mainly starting the day after my period stops, for about a week. Right now it's making me feel very sick and it's very hard to concentrate on writing this.
What is the op and recovery like? How long will I have to take it easy for etc? It's going to be tricky as it's the start of the summer holidays so I'll have to entertain my 2 dds!
Did you get any better after the op?
The specialist did say that if they didn't find anything then I'll be signed off and will just have to manage on pain killers which terrifies me-I can't spend the next 25ish years like this hmm

TiredMule,

Given your gynaecological history, endometriosis cannot be ruled out here. Any pain that is cyclical in nature and gets worse up to and includng menses should be further investigated to see if endo is the cause.

I would write out a list of all the symptoms and insist at that time you are referred to a gynaecologist. Do not let the GP further mess around in potential ignorance. In the meantime till you see a gynae, would suggest you keep a daily pain and symptom diary (you can note pain in terms of severity from 1-10). Write everything down, it will give the gynae clues.

Internal ultrasound scans do not detect endometriosis if it is there (endo can appear in several forms such as "chocolate cysts" which are called endometrioma. Other forms include paint splat type lesions (these are the sort I have) and as these are so small but numerous they are not detected on internal ultrasounds.

As Potterer writes, endo is usually only detected via a laparoscopy.

You will need to be persistent in order to get answers.

Potterer Sun 21-Apr-13 08:59:43

TiredMule so sorry this got missed, what did your GP say at your appointment?

Breastfeeding is sort of like pregnancy in the fact that it gives your body a break from the hormones. So it could well be endo that you are suffering from.

I had a scan for my endo but it only showed up the actual cysts not the endo deposits or the scar tissue, for that I had to have a laparoscopy.

A laparoscopy where they make a small incision just below your belly button and put a camera inside you. They also make a couple of other tiny holes below your belly button and to the left and right to feed in instruments to be able to move stuff around inside you.

I wrote stuff down for when I went to the GP and for the consultant.

TiredMule Tue 26-Mar-13 10:45:20

Hi all, just want to ask a few questions. I'm sat here in agony sad-real doubled over in pain, can't breathe or talk. This is the second month of this pain-last month the GP thought it was an eptopic as the pain was so bad, but -ve pg test.

My story-I've always had quite heavy painful periods-but they have been manageable with painkillers etc. When I was on the pill they were much better but my hormones were all over the place and I never found one which didn't make me crazy!
Anyway I fell pg unplanned with DD1 whilst on the pill and haven't evert gone back on it. I had DD1 and breastfed for 2.5 years-during this time periods were fine. When I stopped breastfeeding they got worse and I started getting a weird pain a week after my period finished (not ovulation-my cycle is long and this was before that) but fell pg with DD2 after a few months. Breastfed her for 3 years-periods were fine, then stopped and they got worse with the weird pain back again.
But last month and this month I've got this really awful sharp, stabbing and aching pain over my left ovary. It is killing me. It starts a day or so into my period and lasts on and off for a week. No pain killer works. My period is very heavy with clots and I have a couple of days of bad period pain as well. These last 2 periods have been shorter than normal but this pain lasts after the bleeding has stopped by several days. I'm only 30 and the thought of many many more years like this scares the shit out of me sad We're TTC no3 so feel like I can't do much about it at the moment sad

I've had 2 scans in the last 8 months-they found a very small fibroid and nothing else, and said that the fibroid is too small to be causing the pain.
I also had a mc in June last year.

I have an appointment with my GP next week and I don't know what to say.
I have always had almost like an upset stomach during my period.
Sorry for the ramble-just typing what came into my head-sorry if it makes no sense.

Could this be endo? I don't get pain with sex, but I have always had low energy levels. Periods are normally fairly regular-except for last autumn a 50 something day cycle which I have never had before.

Potterer Mon 25-Mar-13 13:17:34

I'll pop back on here, I'm further up the thread as fizzylemonade, but I used to get pain down my thighs, and my ankles.

Gynae said that I had endo deposits on the nerves that ran through my abdomen which in turn go down my legs, hence the pain. And the man had just done a laparoscopy on me so it made sense.

I had severe period pain since I was 14 and was told by doctors I just had painful periods and get used to it shock I was put on the pill at 16 to "help" my periods much to my catholic mother's shame grin

I had a very switched on GP who referred me to a gynae and I went on the endo.org.uk site and gleaned as much info as I could. So I kept a pain diary, wrote a brief history of my pain and periods etc and read a lot of books on the matter.

I totally agree with Atilla that knowledge is power. Especially when it comes to discussing the drugs they want you to take and what it will do to your body.

I recently met someone with endo who had no idea that the drugs she was taking were putting her body through a fake menopause, she didn't ask any questions just took the medication and she's to "see how she goes" shock

DrRanj Fri 08-Mar-13 18:47:42

Sorry to revive this thread but yes you can get hip pain in Endo! In fact it is what I get since having dd. I also get vaginal pain.

You're welcome.

I was only diagnosed with endo at 31; I'd had such problems since I was 14 (my endometriosis started from onset of menses) so would not want any other woman to suffer as I have.

Please advise your DD that the caveat re the gynae still applies though; she really needs to see someone who knows their stuff. It is fair to say that some gynaes are far better at dealing with endometriosis and its management than others, she ideally needs to see a cons gynae with an active interest in endometriosis.

Ask lots of questions and write these all down well ahead of time. No question is daft.

BTW I used to get a lot of pain in my hips and in my case it was due to endometriosis. Any such pain that is cyclical in nature as well needs to be properly investigated.

DoesItWearingWellies Wed 23-Jan-13 17:43:49

Thank you Keep and Atilla.

She went to her GP today and he's agreed to refer her to a gynae (luckily she's covered by my DH's private health insurance so it was almost a no-questions-asked referral). He doesn't think her hip pain is endo, but agreed that it's still worth getting it checked out due to her other symptoms.

Atilla thanks for the pain diary tip and the link.

Keep I too am shock by your new GP - in a way it's endearing, but in another it's also his job as a GP to deal with...well...general health, including "down there"!

I would also advise your DD to keep a daily pain (score pain or scale of 1-10) and symptom diary as this will give the gynae clues.

DoesitWearingWellies,

Would also have to say that those symptoms sound symptomatic of endometriosis to me as well.

Any pain that is cyclical in nature and gets worse up to and including menses should be checked out properly by a gynae to see if endometriosis is present. Endo though is usually diagnosed through a keyhole surgery op called a laparoscopy.

Would certainly agree with comments re GP; some of them are completely and utterly useless when it comes to endometriosis and am sure that awareness of this disease amongst some GPs is low. I had one such person tell me that endo was uncommon; I replied that it was the second most common gynae problem seen in women after fibroids!.

Knowledge is power; learn as much as you can about endometriosis. www.endo.org.uk is a good website.

Get the GP to refer your DD to a gynae; not just any old gynae mind you. You preferably need to see someone with both up to date knowledge of endo and its management along with an interest in this disease.

Internal ultrasound scans (I have endo and have had more such scans than I care to mention) do not detect endo if it is there so if they scan her and see nothing do not assume that endo is not there!.

KeepYerTitsIn Tue 22-Jan-13 12:25:03

Hi DoesIt, I'm certainly not an expert but having had endo for around 30 years I will say that all sounds familiar. Do take her to your GP won't you, I'm afraid in my experience endo only gets worse if not treated. If nothing else they will be able to prescribe something to keep the pain at bay (don't know if you are giving her anything for it at the mo), and hopefully do some investigative work, which usually starts with a scan these days I think. Make sure the GP is switched on about endo though, some of the dinosaurs I've encountered have no clue what it is. I've just moved house and my new GP, who is seconds away from retirement, proudly told me when I enquired about a gynae matter "oh no, I don't do "down there", I'm a gentleman". I was like this shock.

DoesItWearingWellies Tue 22-Jan-13 07:41:45

Hello ladies, I was just wondering if I could pick your brains/ask for advice?

DD1 has severe pain in her hip joints and lower back that lasts while she is actively bleeding (IYSWIM?) and Dr Google suggested endo. Some cycles are worse than others for pain. Recently the pain has increased to the point where it has reduced her to tears (which is not like her at all).

She has also said her undercarriage feels bruised/swollen for the duration of her period - could this also be a symptom?

TIA

WakeyCakey Wed 16-Jan-13 17:20:25

Thank god it's day off today. AF has come with a serious vengeance!!
I'm trying out an app on my phone to track my periods to try and give me a better plan of action!
Had some codeine and ibuprofen and its settling but just wallowing with a box set and blanket to relax, would kill for a bath but hate doing it with AF.
Hopefully it won't last too long.
Hope you ladies are all ok today!

DrRanj Tue 15-Jan-13 13:32:19

Hi mam! Sounds like you've had a horrid time. sad

Don't have time to write a lengthy response ATM, but after lunch I will reply properly!

WakeyCakey Tue 15-Jan-13 13:29:03

Grumpy moaner is essential!!

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