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If you have been diagnosed with endometriosis...

(30 Posts)
SlipperyJack Thu 14-Jan-16 15:20:40

...what were your symptoms, and how long did it take to diagnose?

I should say from the off that I have always had extremely painful periods. So did my mum, and her mum before her. I just figured that was part of life's rich tapestry. I was on hormonal contraception from around age 18 to age 34, which gave me blissful respite from periods. However, I was diagnosed with IBS in my 20s. I haven't been on hormonal contraception since I had my daughter in 2012 - had the copper coil fitted in 2013.

Now, I've been back and forth to my GP for about 18 months. Started with severe fatigue and dizziness; loads of blood tests done, all normal except for female hormones which were a little out of whack, leading my GP to suspect early menopause (I'm 42, was 41 at the time) and possible depression. GP recommended sertraline and seeing how I got on, as she was unwilling to prescribe HRT due to all the adverse side effects...

More bloods done about 12 months later - female hormones now normal hmm. Fatigue still the main symptom; legs like lead, every step an effort, brain fog etc. GP said she thought it was still early menopause despite the test results, and that she was willing to consider HRT, and that I should go away to think about it.

Due to various life events (new job etc) I didn't go back to the GP for a few weeks. However, last September I ended up in A&E with persistent lower right abdominal pain. Found to not be appendicitis but the A&E doctor told me to "ask my GP about endometriosis" as he'd seen my GP notes and had clocked that the "appendicitis" had started right at the end of my previous period.

Since the A&E visit, I am now getting severe period-type pain both before, during and after my period, rather than just during my period. It focuses particularly on the spot where I had the not-appendicitis, and sometimes extends to my upper leg. It's a burning, grinding kind of pain, not crampy at all. I also get nausea and diarrhoea along with the pain. Painkillers are useless, even those got illicitly from my MIL with prescription-grade codeine in.

GP sent me for an ultrasound to see if there were any cysts or other weird shit - all clear.

I'm due to go back to the GP next Tuesday, after some particularly bad episodes of pain and worsening fatigue. It's beginning to affect my ability to work, look after my children, and generally live a normal life sad

So, what do you think? Does this chime with any of your experiences? What outcome did you get? Is there anything I should be particularly asking for?

Thanks in advance for your help! (Apologies if my writing style is a bit terse - I'm in pain again...)

AttilaTheMeerkat Thu 14-Jan-16 17:07:56

Endometriosis cannot be ruled out here. Some women with endo get misdiagnosed as well with IBS and some have had their appendix removed, unnecessarily as it turns out, because the cause was actually endometriosis.

Endometriosis is usually found through a keyhole surgery op called a laparoscopy; tests like blood tests and internal ultrasound scans will not detect it if is there because the endo deposits are so small. I have had more internal ultrasounds and blood tests than I care to mention and none of these tests detected it; it was only when I had the above type of surgery that it was discovered. My initial thought was, "no wonder I had been in pain all these years". I did wince in some degree of recognition when I read about your leg pain; endo can get onto the sciatic nerve and cause shooting pains.

The 4 classic symptoms of endo are:-
painful periods
deep pain during sex
pelvic pain (continuous or cyclical)

In general any symptoms that are cyclical in nature, and that get worse during menses, may be due to endometriosis.

My own symptoms were many and varied:-
Painful periods (that is one of its key indicators)
Infertility (endo was part of the overall subfertility issues I have)
Clots of brown or bright red blood
Loss of stale brown blood
red stringey like bleeding with darkly coloured clots
sometimes painful bowel motions
pain at top of legs (sciatic pain)
pain across whole pelvic area
back pain during periods
Shooting pain in anal area (known on here as javelin arse!)

I now know that I had endometriosis from the onset of menses at 15 although it can develop later.

There seems to be a family link to endo. This may be genetic, although some researchers think that family disposition is not necessarily due to genetic inheritance. Studies show that endo is present in 7 to 10% of affected first degree relatives like mother, sister, daughter and 2% of second degree relatives like cousins and aunts. The pattern of inheritance seems to pass down the mother's family.
I would suggest you look at this good website on endometriosis as it gives a lot of information.

I would also suggest you keep a daily pain (note pain on scale from 1-10) and symptom diary as this will give the gynae clues. You have not as yet seemingly been referred to a gynae and that should now happen. I would insist strongly to your GP next Tuesday that you are now referred to a gynaecologist. Not all GPs are up to date or speed on endo by any means and its not always thought of.

Any other questions just ask. Would be glad to help if I can.

AttilaTheMeerkat Thu 14-Jan-16 17:11:37

Were your thyroid gland hormones ever checked re the "brain fog" previously experienced?.

With endo as well I found that painkillers did not really help much if at all. I used to writhe about clutching a hot water bottle to my uterine area (that helped a bit). Do ask for a referral to a gynae and do not take no for an answer!. It is all too easy to be fobbed off.

Willdoitinaminute Thu 14-Jan-16 22:43:32

The Mirena coil has been my best friend for the last 11 yrs it is the only treatment that has normalised my life since my early 20s. I have endometriosis grade 3/4 involving bowel, bladder pretty anything else in my abdomen. It was responsible for multiple miscarriages and infertility. I did manage one successful pg and my DS is considered a bit of a miracle

There is a very good internet support site for endo with loads of advice. You can ask for recommendations for gynaecologist who specialise in endo in your area. Laparoscopy is still best for definitive diagnosis although some use MRI scan. I have been symptom free for so long I have not kept up with the site but I think it is known as Endo Uk.

SlipperyJack Fri 15-Jan-16 21:05:59

Thanks for the feedback! Apologies for not coming back to the thread before now.

Attila, you've reminded me about the arse daggers! Yep, check. I have had two full bloods done 12 months apart and everything was within normal limits - thyroid, iron, vit B etc. I'm willing to try hormonal contraception again if that will help.

willdo, I had no trouble getting pregnant the three times I tried to (2 live births, one miscarriage). However, that was long before this pre- and post-period pain started.

I've been Googling a lot and interestingly, the NHS Choices entry specifically mentions fatigue in one of its case studies.

AttilaTheMeerkat Sat 16-Jan-16 09:26:53

I would still request a referral to a gynaecologist (and preferably someone who has had vast experience in dealing with endo as well) for further evaluation.

As mentioned before, blood tests do not detect endometriosis if it is there.

Hormonal contraception will simply put endometriosis if present into abeyance, it does not go away of its own accord.

Let us know how you get on at the GPs on Tuesday.

Titsywoo Thu 21-Jan-16 00:27:45

I was diagnosed a year ago after a laparascopy (only way to properly diagnose endo). I didn't really have any symptoms. Never had painful periods or anything. I had what seemed to be a uti without the burning and they did a scan and found a large cyst. Further investigation by a gynae and senior sonographer pointed to possibility of endo so had the lap done. Diagnosis was severe endo and an mri confirmed the cyst is an endometrioma. It's still there and we are watching and waiting at the moment. Since I am now watching for symptoms I find the day or two before my period I get exhausted (like I need to sleep now tired in the middle of the day) and I have a bit of sciatica but that's it. I was lucky that the gynae I went to is an endo expert. See if you can find an endo clinic locally to be referred to. Look up some of the endo pages on Facebook for help.

Titsywoo Thu 21-Jan-16 00:32:45

With regard to blood test you could ask to have the ca125 done. Usually used for people with ovarian cancer but often with endo the levels are raised (whereas with cancer it would be very high like over 400 and normal is below 35, people with endo will often have a reading of say 100). This is not particularly accurate as a test (mine are always 19 with severe endo) but if you get an elevated reading it might nudge them to refer you.

FormerlyKnownasFK Fri 22-Jan-16 12:12:06

Hi slippery, I have grade 4 endo, I was about 29 when diagnosed, and had increasingly painful periods, but not crampy pain, more like shooting / stabbing which would start off mild but had me bedridden on occasion. I never found a painkiller that would touch it.

Over the years I've had two laparoscopies, two courses of zoladex which have helped, and a mirena for the last 4 years. I don't generally experience pain anymore although I sometimes get bowel symptoms (constipation / diarrhoea) and suffer from sciatica although no diagnosed link (I have my suspicions!).

Please push for a gynae referral if your GP is being slow, it took me 5 years to get my initial diagnosis, which was ridiculous.

Pickofthepops Fri 22-Jan-16 17:28:34

Me too - posting quickly but Google shahal Kazhali - he has endo info online too and a useful diary sheet to keep track of symptoms. He diagnosed suspected endo by ultrasound when id has other doctors do same without outcome. Symptoms v similar to yours. Laparoscopy removed endo on ureter. Good luck.

PootlewasthebestFlump Fri 22-Jan-16 17:49:45

I have endo and thyroid problems. The symptoms you described could be both. I have had them ++++ in recent years.

HOWEVER - make sure they test your B12. It's a separate (and expensive) blood test from FBC and hence is rarely done. Your symptoms are classic B12 deficiency.

I was diagnosed a year ago with severe pernicious anaemia having suffered for around 10 years - each time it was put down to endo, thyroid and - but of course- CFS.

A year on, B12 jabs every few weeks, I'm like a spring lamb.

honeysucklejasmine Fri 22-Jan-16 17:59:21

I have endo and an underactive thyroid.

Painful and heavy periods were main symptom. Painful as in prescription drugs such as tramadol not very effective painful. Also fatigue etc. But my thyroid was diagnosed when I was 19 so they weren't sure which it was a symptom of.

I was eventually referred to a gynae when I was 23, having started my periods aged 12. I had a diagnostic lap in 2009 but lesions were inoperable (by that surgeon) so had chemical menopause to kill tissue. Had second lap with different surgeon at 27, who went to town on my scar tissue. Unfortunately after a few months of no appreciable pain difference it was suggested I might have adenomyosis too (I think that's the name of if... Endometrial tissue within walls of uterus) which there is bugger all they can do bar remove uterus and hope that helps.

So currently expecting dc#1, and if pain still awful when periods return dc#2 will follow asap before I request a hysterectomy.

The joy of chronic conditions, eh?

OrangeSquashTallGlass Fri 22-Jan-16 18:02:34

Definitely push to see gyne. The only way to diagnose endo is with a lap, but an experienced gyne will be able to give you a pretty good Idea after a chat and a scan.

Titsywoo Fri 22-Jan-16 18:06:00

My gynae was sure it was endo after a scan but only because the adhesions (internal scar tissue) I had was pulling my ovaries etc out of place. If you have endo but not too many adhesions they won't see it on a scan.

SlipperyJack Fri 22-Jan-16 21:01:20

Thanks everyone for your experiences! I had a v good visit to the GP; saw a different one from before, and for the first time I felt properly listened to. When he said "so you're basically in pain two weeks out of every four, and exhausted four weeks out of four" I confess to having a bit of a wobbly lip blush

I've got a prescription for mefanimic (sp?) acid and a referral to the gynae specialist.

pootle, I think I've had B12 checked but I'm not sure. Will double check.

Pickofthepops Mon 25-Jan-16 16:18:33

My msg earlier should have said shaheen Kazhali - good luck

randomthrowaway Tue 26-Jan-16 17:57:31

Can I just ask about hormonal contraception effectively putting endo on hold - would this include painful sex?

Nowwhyareyoucrying Thu 28-Jan-16 20:26:12

This thread has been really informative, and I suspect this is what I have too. You have my deepest sympathies op as I have many similar symptoms. I have suspected for quite a while but everything takes soooo long to get things moving.

Sorry to hijack a bit op but I have an appointment with a specialist next week but am wondering what I should take with me? A list of symptoms? Anything else?

I'm also really really anxious about a laparoscopy and the anaesthetic, which I've never had before (perhaps why I haven't been as forceful as I could). What's the recovery like after? Argh sorry bit of a wimp. BUT if it stops the pain I will do everything I can.

SlipperyJack Thu 28-Jan-16 20:49:14

Hi nowwhy, hijack away!

Let me try to reassure you as regards the anaesthetic. I've had two generals, and each time I had no unpleasant after effects. With the first (where I was under for a while) I had a very dry mouth and slightly sore throat as a result of being intubated, but it went off after a couple of hours. And on the upside, the waking up period was amazing maaaan - think floating on a fluffy pink cloud. The second GA was even more of a non-event - it was like someone switched off the lights, and then switched them on again. DH has had two GAs and both of his were like that too.

Good luck with your appointment. Mine has come through for the third week in Feb. By which time I'll probably be in pain again, which I suppose will be useful... I don't know about what to take. I might write down everything I can think of, as an aide memoire, as I have a tendency to go blank in situations like that!

Titsywoo Thu 28-Jan-16 22:27:28

Recovery from laparoscopy was fine - no pain and I didn't take any pain killers. I was tired and weak for about 3 days though.

Depending on your situation laparoscopy is likely to be diagnostic only though. If it is endo they may need other surgeons to deal with it (bowel involvement etc).

AttilaTheMeerkat Fri 29-Jan-16 07:46:17

"Sorry to hijack a bit op but I have an appointment with a specialist next week but am wondering what I should take with me? A list of symptoms? Anything else?"

I would write down any question you want to ask well ahead of time as you do not want to leave there thinking, "oh I should have asked about...".

If you have kept a daily pain and symptom diary I would take this along with you.

AttilaTheMeerkat Fri 29-Jan-16 07:52:03

I would not want to have a purely diagnostic lap as that will involve having yet more surgery going forward.

The worst thing I found about my surgery was the pain in the shoulders post lap; that gas has to go somewhere and it is upwards. Painkillers though took the edge off it and I was advised to have 2 days off work post op.

You need to have a surgeon who is highly experienced in dealing with endometriosis, I would ask this person outright how he has handled such cases.

evilgiraffe Fri 29-Jan-16 08:01:49

I have stage IV endo - as severe as it gets. No symptoms at all, aside from infertility. After TTC for three years (numerous ultrasounds, blood tests, and an HSG), I had a US which showed a large cyst and a potentially blocked fallopian tube. As I was referred for IVF at the same time, it was suggested I have a laparoscopy to see what was up. Six months later the cyst and damaged tube were removed, and my surgeon spent a long time clearing out lots of endo. Six months after that I was pregnant smile

Pregnancy and breastfeeding have done my fertility good, as I am pregnant (naturally!) with DC2 now.

I think I an fairly unusual in having endometriosis with so little in the way of symptoms, though.

evilgiraffe Fri 29-Jan-16 08:04:27

I found recovery from the lap very hard, for what it's worth. I was a right mess for a week or so and on painkillers for a good fortnight. It was much more painful than recovering from my c-section.

Nowwhyareyoucrying Fri 29-Jan-16 09:34:32

Wow quite a mixed bag with recovery experiences. The pink cloud is what I'm hoping for Slippery. I have read about the shoulder pain too. If I'm honest it's probably just the 'going under' which completely freaks me out as my grandad had a very bad experience once, and I think that plays on my mind. I guess I will just have to talk to the dr about it. The pain itself doesn't really bother me.

I will also ask how they have dealt with similar cases thanks Attila, and tell them I would prefer any problems to be dealt be with straight away if possible. My mind tends to go blank when I try to think of questions but I know there's loads.....

Evil your story gives me a bit of hope. I haven't been on bc for 2.5 years and no pregnancy. Although I have more symptoms than you did I also don't have some of the key ones. I have very light periods and short periods. Which again I think is why they haven't done much initially to diagnose me. I also have some small cysts, and 'PCOS' has been batted around but again i don't fit the criteria. My cycles are very regular, hormones within normal ranges, not overweight or hairy blah blah blah so again it's kind of brushed under the carpet. I'm very frustrated. I firstly though want to manage the pain which is crippling and I hope that this in turn will help fertility.

Good luck with you appointment too Slippery!

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