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Women's health

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Have i got endo? Medical professionals not listening

28 replies

UnderBlue · 30/06/2018 07:20

Hi,

For the past 4.5 years I have been suffering with severe severe period pain. More recently this pain appears outside of my period too, and I have severe cramps and bloating, and diarrhoea too sometimes. These are my symptoms:

Symptoms during period:

  • Severe severe abdominal pain for 2 full days despite taking pain killers.
  • heavy clotted bleeding
  • a very painful sensation sitting heavy on my vagina and on anus. Almost like a baby is pushing down on it?
  • a 10 day period, with first few days just spotting (which is abnormal for me).
  • feel nausea and sick (again didn't have that before)

Outside of my period:

  • severe stomach cramps and bloating especially in the morning
  • severe stomach pains during exercise
  • on and off diarrhoea
  • occasionally pain during sex

I have had a vaginal ultrasound twice and both times they said there were no fibroids or cysts and everything looked healthy. I got refered to a gynocologist and saw a registrar who said it just sounded like painful periods and I should either go on the pill or take taxonomic acid (neither of which are options for me; the latter i can't due to history of stomach ulcers, and the former, gives me mood swings).

So does it sound normal as doctors are suggesting or not? Should I again and ask for another referral?

OP posts:
Tinkobell · 30/06/2018 07:23

Where about some in the country are you OP?

UnderBlue · 30/06/2018 07:39

@Tinkobell I will DM you.

OP posts:
madvixen · 30/06/2018 07:42

An ultrasound on its own wasn't enough to diagnose endo in my case. I had to have a laparoscopy which then showed something called chocolate endometriosis (only a man could have named that!).

The only thing that I have found that works for me is the Depo injection as that stops my periods completely and can be taken without a break. It really has been a lifesaver for me.

UnderBlue · 30/06/2018 07:44

@madvixen the injection isn't am option for me as I'm planning to get pregnant next year. I'm in my late 20s.

OP posts:
oreosoreosoreos · 30/06/2018 07:45

The only way endo can be officially diagnosed is through surgery (usually a lap and dye).

Your symptoms sound like they could be endo, but they also sounds like there could be something else going on.

How old are you? Did anything happen 4.5 years ago?

I have endo and it didn't just 'start', although some symptoms have got worse over the years, and I didn't realise I had it until we started fertility investigations.

UnderBlue · 30/06/2018 07:49

4.5 years is my first period after having my first baby, who was born vaginally. Before that I did have painful periods but it was manageable (and I guess I didn't have to worry about anyone else so wasn't keen on making a fuss)

OP posts:
Chooklass · 30/06/2018 07:54

Hi @UnderBlue , I had problems with painful irregular periods all through my 20s and it's only since not being able to get pregnant that docs have taken it seriously and referred me. It's mainly polycystic ovaries which are my issue but they also spotted suspected endo (not confirmed yet). If you are under 35 you have to have tried unsuccessfully for a year before they will do any fertility tests on NHS. I suppose what I'm saying is it might be worth you cracking on with the baby-making sooner rather than later?! (Wish I had...) x

Tinkobell · 30/06/2018 07:58

Hi OP - we are not in the same part of the country, shame. My suggestion to you might be to get a 2nd opinion in a gynae that specialises in abornmal bleeding - they do exist and not all gynaes are hot on this. TBH a good ultrasound would show up a fibroid or anything untoward which would be the cause of physical bleeding.
Your problem does sound very hormonally caused - all the things you describe with sickness etc.
Could you consider a mirena coil? It acts in a much more limited way just on the uterine cavity rather than the whole body and in most cases bleeding is much reduced. Another option might be progesterone only mini pill?
Good luck OP - constant bleeding is very tough. Look at your diet too, take a good iron supplement like Spatone.

Tinkobell · 30/06/2018 07:59

Did the ultra sound scan also cover your ovaries OP?

Faceyface · 30/06/2018 08:02

Considering the pressure you feel you may want to rule out a prolapse, especially if you plan to have another pregnancy soon.

Chooklass · 30/06/2018 08:04

Oh and I second what @Tinkobell says about diet - that's helped more than I ever imagined with the pain for me. Really seems to have helped balanced my hormones. Might not work for everyone but worth a try while pushing for more medical treatment? X

Mummyoflittledragon · 30/06/2018 15:45

@UnderBlue
I didn’t have the energy to respond earlier and just remembered your thread. I’ve just had a total hysterectomy and ovaries removed. (That means uterus, cervix, Fallopian tubes, ovaries). So I’m tired.

I had adenomyosis - along with endo and a blood filled cyst. Adenomyosis isn’t a well known but is actually pretty common. It’s only recently been diagnosable pre hysterectomy. I am actually wondering if you have this. Or a fibroid. You could also have endometriosis of course but the bearing down thing to me says probably a heavy uterus.

A radiographer can pick up a fibroid. But only an experienced radiographer can tell whether the mass they see on the screen is a fibroid or adenomyosis on a vaginal scan. And only an experienced radiographer can see if adenomyosis is just in one spot or widespread.

Your symptoms are similar to mine were. The pressure from the uterus, the pre period spotting for several days, the longer period and the intense pain. But these are also symptoms of a fibroid and overlap a little with those of polyps.

As for endo. This can be picked up to a certain extent on mri but the only sure way is to investigate laparoscopically.

In your position, I would have a read up about adenomyosis, fibroids and polyps. I would present with as many symptoms as possible and ask for a referral to a fully trained gynaecologist as opposed to a radiographer (I saw the latter through the nhs and they didn’t pick adenomyosis up). Unless you has stated otherwise, I would also tell them you’ve been ttc.

If you are refused, pay to see one yourself. It will probably cost a lot. But will be worth it as any of these cause difficulties conceiving and potentially infertility. My adenomyosis had made me completely infertile.

As for the pain. Yes, mine was very intense the last few months. The gp gave me 30/500 cocodamol and I took ibuprofen as I can’t take mefenamic acid. It helped to a certain extent. Have you tried taking otc cocodamol combined with any nsaid such as mefenamic acid or ibuprofen etc? If yes, ask for the higher dosage cocodamol on prescription. You can also get diclofenac suppositories. These work far better than orally.

The 30/500 cocodamol wasn’t enough and I cant take codeine alone so I asked the gynaecologist for something decent. He gave me tramadol. That caused mega side effects. Then I went back to the gp and he gave me morphine. So I took permanent paracetamol and ibuprofen and morphine for the breakthrough pain. Morphine was such a relief that I took it in low doses for most of the 7 weeks til my op. I’m a chronic pain sufferer. It’s difficult to get tramadol and morphine btw. I’d already tried some other painkillers along the way years ago.

Graphista · 30/06/2018 16:05

It does sound like endo to me, I also have the 'heavy' feeling and not to my knowledge got adenomyosis or fibroids or prolapse.

But I agree endo is usually present from the beginning.

It's very hard to get Drs to take us seriously. Keep pushing for another referral - if possible to a gynae specialising in endo or at least gynae surgery. Because the only way to definitively rule out endo is a lap.

UnderBlue · 30/06/2018 19:15

Thank you everyone! I'm going to take this list and go to the GP.

@Mummyoflittledragon Thanks, that was very detailed, and I will look into the names you suggested.

OP posts:
UnderBlue · 30/06/2018 20:35

Today I'm mid-cycle and I've got severe pain in my left pelvic area. I also feel sick. When I think back, I've actually had this type of pain since I first had sex, about 10 years ago. I just kept thinking it was IBS related.

OP posts:
UnderBlue · 30/06/2018 20:38

@Mummyoflittledragon I'm really sorry to hear of all the pain you've been through and the infertility. I hope you have a speedy recovery.

OP posts:
Mummyoflittledragon · 30/06/2018 21:05

Thanks. It’s ok. I have a daughter Smile. It has truly been hell. I have chronic fatigue (ME), fibromyalgia and chronic pain. I haven’t been part of the real world for years, not working, practically bedridden. I’m really hoping that this was the main reason for my illness so I can start to live a little again.

I do wish you the very best of luck. The sooner you get this sorted, whatever it is, the better chance you have of getting pregnant. All of the gynaecological issues listed above are progressive.

I had ivf to have dd. On the scan 11/12 years ago, it was assumed I had a fibroid. But this was using what is now outdated equipment and there was no way to tell it apart from adenomyosis. I realise now how lucky I was to get pregnant and go full term as all those years later my uterus had swelled to the size of approx a 6 month pregnancy.

I wish all the best of luck.

UnderBlue · 01/07/2018 09:25

@Mummyoflittledragon

Thank you so much! I have been getting the niggling feeling that my fertility is affected. I am going to the GP first thing next week.

OP posts:
oreosoreosoreos · 01/07/2018 17:56

Anyone who suffers from endo pain, I'd also really recommend lavender essential oil - a couple of drops into a small capful of carrier oil, massages into the abdomen, a couple of times a day.

I've no idea why or how it works, but it's taken me from nearly passing out/throwing up with the pain (even on max pain relief), to hardly ever needing to take pain relief!

oreosoreosoreos · 01/07/2018 18:00

Meant to say, mine have also got worse after DS, but I think that might be to do with perimenopause rather than the endo!

FaithEverPresent · 01/07/2018 18:02

I had similar symptoms for years. Normal ultrasound, CT abdo, HSG. We had fertility issues but they found male factor issues so they assumed it was that that was a problem. Did have a baby but my issues continued, including chronic abdo pain. In the end I pushed for a Gynae referral and had a laparoscopy which found and treated endo.

I would definitely ask for a referral, preferably to an endo specialist. Good luck.

Mummyoflittledragon · 01/07/2018 19:21

I hope it all goes well. I think to get a referral you have to say the right things and it sounds as if you’re doing your homework.

Iputthescrewinthetuna · 01/07/2018 20:04

Op, Since I was 24 I had what they thought were 'bad periods'
I ended up in pain daily.
They checked for endo and fibroids etc.
I was eventually told I had 'adenomyosis'
It is similar to endo, but in the womb.
I had all of the symptoms you describe. I called the pressure downstairs almost like I was carrying a bowling ball down there.
Many DRs refused to believe adeno exists or causes pain.
I had a wonderful DR who specialises in adeno.
Bring it up with your DR. Ask if what you have could be adeno? It might kick start the dr investigating that route.

Iputthescrewinthetuna · 01/07/2018 20:24

14 not 24

UnderBlue · 01/07/2018 21:04

@FaithEverPresent how was your endo treated?

@Iputthescrewinthetuna strangely enough one locum GP I spoke to told me I had adneomoyosis over the phone but when I went in they said no you don't have it. How did they treat your adneomoyosis?

OP posts: