Endometriosis or suck up the pain like doctor seems to suggest?

[kikisparks]

Just wondering if anyone can help with what to do. I’m lying in bed crying because of period pain, also period just come and 18 months unsuccessfully TTC so sorry a bit emotional about all this and that it’s quite long.

I’ve suffered painful periods as long as I can remember, I think they have gotten worse over time but my memory is not great. They are only very painful about 2 days a month during heaviest days of period- other pain during rest of month is very mild. Over last year or 2 I’ve noticed all pain is always concentrated to right side- in pelvis, abdomen, hip and down right leg. Periods during these days very heavy with clots, night time heavy duty pad soaking in 2-4 hours. I also almost all through my cycle have pain during sex and sometimes up to 30 mins after sex have burning pain. For some reason during my fertile week sex is less/ not sore. I have had the pain during sex investigated by gp 18 months ago, no sti or infection so they didn’t do anything about it.

I haven’t ever independently gone to gp about painful periods. I don’t like to complain and thought it was just a fact of life. Also I don’t think pain is bad enough as a) it is only 2 days each month and b) painkillers can dull it sufficiently for me to function for about 3 hours at a time. I’ve never had to take time off work for it.

During this 48 hour period I do have to take painkillers every 4 hours round the clock. This means for 2 nights every month I don’t get much sleep as I’ll take the painkiller at 11 and get woken up in pain at 2.30ish then have to wait til 3 to take the painkiller then half 3 or 4 to get back to sleep once it kicks in. When I wake up at 6.30 it’s usually in pain and then have to wait til 7 to take painkiller. Throughout the day as painkillers wear off I struggle to concentrate and get stressed out until next painkiller kicks in. I sometimes feel faint and nauseous. I do cry due to pain a lot but usually manage not to at work. It is still sore with the painkillers but bearable for most of time as long as I take them round the clock.

During infertility investigations I’ve told gp all my symptoms which also include spotting for 2-3 days before period and bowel issues during period. GP said it’s not endo as no significant pain in between periods. They don’t suggest my pain is abnormal so presume that I should just continue as I have and deal with it- as long as I take aspirin or ibuprofen It’s only debilitating for a few hours each month so that’s maybe reasonable? I hate it though so if I’m lucky enough to have our longed for baby I will get hormonal bc to see if that helps, only been on it for 1 month before aged 18.

Also seen fertility specialist and had transvaginal ultrasound with no issues so she doesn’t think I have it either. She knows all symptoms except I forgot to mention the spotting to her. I’m getting a hycosy or HSG soon too. As far as I’m aware nothing rules out endo except a lap but ultrasound and tube dye test could show possible indicators. Infertility currently unexplained all other tests (sperm analysis and progesterone) fine.

Thanks anyone who read that essay. I know nobody can answer for sure but those with endo experience, if I can generally cope with painkillers and the pain is only during period are the docs right and there’s no point in further investigations, or should I push this? I don’t like to waste doctor’s time if I can avoid it but if this could be causing my infertility I’d really like it checked. I realise others have much worse pain too that painkillers don’t touch at all so don’t want to be the pathetic one complaining when other people have more valid cause for complaint.

I’ve also just realised writing this down that I’m taking more than the recommended dose of painkillers- although it’s every 4 hours it should only be 6/8 in a 24 hour period. I’m usually not that slow, not sure how that has not occurred to me before. Also I don’t know what to do about that and still be able to work and get any sleep

Push it.
I have/had endo and took over 10yrs of being fobbed off to get a diagnosis and treatment (and going private for consultant).
If you were a man would the GP ignore your pain like this?
Especially as youre also having fertility problems.
It makes me so so angry!
Google endometriosis uk, their website is helpful. I think there’s a symptom ticksheet which is helpful to take/remind you for appts.
You don’t have to put up with this

And try another GP.
You’re not pathetic, who gives a shit it other people have it worse. Your situation is still bad!
(God I’m angry for 4am )

No you are not pathetic at all. I would certainly push for further investigations now via the GP and you really need to see another gynae. This is not imagined. Not all gynaes are created equal by any means, some are far better than others. What you describe is not a problem you should be putting up with at all and I feel you have been fobbed off and otherwise dismissed to date.

I thought I was reading about myself there for a moment because I was the exact same. I did not and never had significant pain between periods either. Ignorance of this is precisely why so many women go undiagnosed for many years.

I was eventually diagnosed with endometriosis in my 30s; I had what are now recognised as classic endometriosis symptoms from onset of menses at 14. In my case also the pain was worse during the first couple of days of my period too and I also used to get pelvic pain and sciatic nerve pains down my legs. Any symptoms that are cyclical in nature and get worse up to and including menses should be checked out properly for endometriosis.

Deep pain during sex is a possible indicator of endometriosis as well and endo can get onto the intestines also.

I have also had a HSG and more internal ultrasounds than I care to mention during the course of fertility treatment and none of those saw the widespread endometriosis deposits. It was only the laparoscopic surgery that determined properly that I had endometriosis. Whilst the endometriosis was not the main factor re my fertility problems, it certainly did not help any when trying to conceive.

This is the website of endometriosis UK www.endometriosis-uk.org/. They also have a helpline. Do call them and let us know how you get on.

You will need to be persistent in order to get answers

Questions to ask your doctor

What if your Endometriosis is caused - or made worse - by things that you eat, or don't eat ?

You may think that this is fantasy since you have a terrible painful illness and you may be expecting your doctor to prescribe a drug to help you, but this information has helped a number of women

Here are some questions to ask doctors about Endometriosis:

• What causes it ?
• How will looking at it and scraping it help me get better ?
• How can I stop it recurring ?
• Do I have too much Estrogen in my body ?
• Could my illness be caused by things that I eat, or don't eat ?
• What can I change about my diet and lifestyle to help my body repair itself ?

These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition. It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.

If your doctor won't do this, try a search for BANT or Nutritional Therapist and interview 10 of them to find 1 who has had success advising about Endometriosis

Search online for "anti-inflammatory diet"
Here is an example: Anti Inflammation Food Guide

Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up. You may find that keeping a Food Diary may help you find out which foods make your Endometriosis worse and which may help

This and the suggestions below may help to reduce the pain, and reduce the Inflammation that may be affecting your fertility

Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

• Increase your Vitamin D
• Increase your Omega-3
• Reduce your Omega-6

Here are some relevant references that may be useful to you:
Vitamin D Wiki
Optimise Omega-6/3 Ratio
How much Omega-3 ?
15 Omega-3 Foods
What to Do About Inflammation ?
Expert Omega-3

PS: Search these sites for both Endometriosis and Fertility
.

@Namechange97543 thank you so much. I honestly thought everyone would just say period pain is a fact of life and just deal with it. I will go back to GP about it. She was nice just a bit dismissive I need to be more assertive. I’ll have a look at endometriosis U.K. and the ticksheet. Thank you for your anger on my behalf has given me a boost, been close to going home sick from work with pain as I’m now refusing to take too many painkillers

@AtillatheMeerkat- thank you! The gynae is a fertility specialist I think so maybe I need to see one whose more specialised in dealing with these kinds of problems? I’m seeing the fertility one again in August though so I’ll see if I can press it. At our first appointment she kind of fired questions at me quickly so I need to be more prepared next time so I can ask questions too. Also thanks for saying your symptoms are the same as mine as that makes me feel I’m not completed wrong in thinking endo is a possibility- the leg pain in particular has made me suspicious that this isn’t just normal period pain. Thank you I will call that helpline too. The pain is a major issue but if endo is there and impacting on my fertility I feel I need to know as it’s heartbreaking every month and somehow feels worse with no explanation why it’s not working. I hope things resolved for you, were they able to help with your endo once they found it? Are you still having the fertility problems?

@AlexGreen I will ask that but in my experience GPs don’t know much about nutrition. I don’t eat meat or dairy and I supplement with vitamin D and omega 3 every day. I do eat a fair bit of nuts though which I think can be high in omega 6? Thanks for that anti inflammation guide that’s helpful. I do eat a lot like that guide says but could probably cut down on the sweet and fatty stuff like non dairy ice cream and have more fruit, I get a lot of fibre but not 9 portions of fruit and veg usually only 5.

Thanks everyone I will push this further, I’ll need to get DH on side as he tends to agree with whatever doctors say but has been worried I’ve been in so much pain.

@AlexGreen I’m going to up my vit D and omega 3 supplements after reading those articles. I already switched from flax to algae based omega 3 and that looks like it was a good shout based on what I’ve read. Thanks again for the tips.

You should most definitely push it. It takes a horrendously long time for endometriosis to be diagnosed in this country and that is recognised to be a problem. It happens because of experiences like yours.

I had a lap for endometriosis - my symptoms were very painful periods and bloating. No spotting. In the months leading up to the lap, the pain had become a lot worse. After operating, the doctor said there had been a lot of recent growth (hence the increased pain). You need to see a consultant who specialises in endometriosis. Dreadful pain is a good enough reason on its own to investigate.

Having endometriosis was the last thing I wanted because I was trying for a baby at the time. I wasn't interested in other people's views or any dismissive GPs - I just wanted to rule out this illness that could be standing between me and a baby. It took the lap (privately to speed things up) followed by an induced menopause (for around nine months). Then I fell pregnant after 5 or 6 tries. I remember being told after surgery that it was unlikely I would have conceived without treatment - but the good news was that it worked. Good luck.