Very painful periods sign of a problem? - Fertility Network UK

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Very painful periods sign of a problem?

Lilly12255 profile image
23 Replies

Hi,

I never had painful periods before and now I am suffering. The pain is not the issue as it will go away. What I am concerned about is it being an indication of another problem to add to my list. Anyone knows if it can be a sign of fibroids/:endometriosis or some other condition?

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Lilly12255 profile image
Lilly12255
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23 Replies

I have endometriosis & have always suffered with very painful periods from when they started at 12 years old. I masked it with the pill until I wanted to have a family with my hubby. It took nearly 6 of years of trying unsuccessfully ( labeled as “unexplained”) after it was diagnosed & treated we had a chemical pregnancy but after 2 more surgeries to treat it we had our 14 month old daughter & I am expecting our second baby beginning of April. I think having endo properly treated by an endometriosis surgeon 2 years ago was the turning point for us. Definitely recommend a laparoscopic surgery to check/treat for endometriosis as if doesn’t show up on any scan ( unless you have the chocolate cysts / it’s so deep it shows up on MR) I & can affect fertility xxx

in reply to

Just to add I had many other gynae & bowel symptoms with my endo. The bleeding was excessive & made me anaemic. Also no pain killer would ease my monthly pain ( not even morphine!!) Endo UK have a useful pain & symptom diary that you can download & record it to show your GP. Getting a endo diagnosis can be a tough struggle. Good luck xxx

Nicki17 profile image
Nicki17

Hi Lilly, sorry to hear you're having painful periods. As a sufferer of this due to endometriosis I understand how fertility issues and pain (or any sign of a potential problem) can cause concern or distress.

Whilst painful periods can be caused by fibroids or endometriosis I believe painful periods can also be the result of hormonal, lifestyle or dietary changes. Although easier said than done, I wouldn't worry too much about it being something more serious unless you are in extreme pain, experiencing heavy bleeding and this is an ongoing problem, in which case I would suggest you need to see your GP / A&E in an emergency.

It might be a good idea to see your GP anyway but if it were me I'd probably monitor the situation for a couple of months and go armed with detailed info so your GP has good enough grounds to refer you for further tests if needed.

Hopefully it's nothing serious and your cycles will be back to 'normal' soon x

Lilly12255 profile image
Lilly12255 in reply to Nicki17

Did your GP test you for endometriosis?

Nicki17 profile image
Nicki17 in reply to Lilly12255

Yes, after many years of pain I was diagnosed with endo by MRI. I have more recently found out I have fibroids too.

Just to add, I was only diagnosed this way due to mine being quite severe.

An MRI or internal ultrasound might be a good way forward for you but I would suggest to monitor all 'symptoms' first for at least a couple of months. It might be nothing at all as our bodies are changing all the time due to many factors.

Lilly12255 profile image
Lilly12255 in reply to Nicki17

Nothing is visible on ultra sound, as I am doing IVF, so the doc would have seen it.

Nicki17 profile image
Nicki17 in reply to Lilly12255

I also had an ultra sound which did not pick up anything. I had an MRI not very long after and it was visible for me.

The only true way to diagnose endometriosis is by laparoscopic surgery.

For those who have endometriosis this can prove beneficial for pain and fertility issues. For others, even with endometriosis, surgery can cause more harm if fertility is your primary goal due to the cause of scar tissue, and it can affect fertility depending on where is being excised. This is why I say it is best to keep a record of your symptoms so you, your GP and fertility Doctors can make the best decision re: further investigation for you.

At this stage it could be anything, easily addressed by dietary or lifestyle changes or it could just work itself out by itself so please don't worry. Keep a record and talk to your Doctors. Good luck x

Lilly12255 profile image
Lilly12255 in reply to Nicki17

It seems to hurt a lot on first day and then second day is better. So to investigate if I have endometriosis, I would need a surgery that could harm my already low fertility?

in reply to Lilly12255

Sorry to but in- none of my 3 surgeries comprised my fertility in fact in my experience my fertility improved my fertility so much so I have become pregnant 3 times naturally without the surgeries my beautiful daughter wouldn’t be here & wouldn’t be having our second baby in April.. The endo was the only cause of infertility for us, in a way we were quite lucky . My surgeons were always aware my fertility was always my biggest priority over pain & management. No surgeon can do anything without your consent. Not all women who have painful periods will have endometriosis but if you have other tell tale symptoms of endo perhaps talk to your doctors ( can include bowel issues as mine affected my bowels as well as gynae symptoms) it’s such a shame it’s not easier to diagnose it possibly why there’s such delay for diagnosis 😬 surgery is quite extreme but if you really do think think you might have endometriosis a lap is the only way to know for sure xxx

Nicki17 profile image
Nicki17 in reply to

Thanks Jess for adding in your experience. I think it's fantastic that your surgeries worked for you and I know they surely have worked for many others but I have had an investigative laparoscopy and was advised against excision surgery by a very renowned Endo Consultant along with my fertility doctor. I also have stage 4 endo. The scar tissue from that laparoscopy, without excision has already added to my fertility issues, so I think we need to be careful when advising others (not saying you have told the OP what to do).

There is no 1 size fits all. Endo affects everyone differently and can be in different places, this needs to be balanced with a variety of other health and fertility factors unique to that person.

The OP does not know she has endo at this stage. While pain is concerning it does not mean she has endo. Whilst surgery may work for some I think we have to be careful advising others of quite a drastic investigative method without advising of the potential risks. Especially with fertility issues in the mix. I'm not saying do nothing but there needs to be an element of caution.

I hope I haven't caused any offense, not my intention at all. X

in reply to Nicki17

I said she needed to speak to an expert in the field with concerning symptoms & if endo suspected a lap would be needed to diagnose. The delay in diagnosing endo is outrageous.People here can only reflect for their own experience good or bad. I’m personally very grateful for my endo surgeon without his skilful expertise I wouldn’t have my daughter or have another baby on the way we’d still be trying & getting no where. No advice here should ever replace any advice from the medical profession. All this is a support group. My experience isn’t a basis for forming a medical opinion nor would I want it to be taken that way xxx

Nicki17 profile image
Nicki17 in reply to Lilly12255

This pain could be for a variety of reasons, but if you have symptoms that look like you may have endometriosis and you wish to investigate, the gold standard is surgery.

Especially if endometriosis is found in places such as the ovaries, there is a risk this will affect your fertility. Any Doctor will also advise you of this. This doesn't mean surgery can't be beneficial for many but for others surgery is not always advised due to this risk. A Doctor will consider your fertility, pain, general health to make that assessment for you.

Lapinblanc88 profile image
Lapinblanc88 in reply to Lilly12255

I had dozens of scans and nothing ever showed up. Meanwhile my endometriosis was expanding and my periods were agony

15 years later after a visit to ER for suspected appendicitis they found a 5cm endometrioma

My gynecologist said none of my adhesions are visible but I have stage 4 endo and in several organs , deep and infiltrative

Same0508 profile image
Same0508

Hi.... It's better to also do pap smear once also... Mine was always painful period with heavy bleed all 5 days.but in my diagnostic laparoscopy there is no endometriosis. I have pcos from very early age so that might be the reason that I still hv heavy n painful...I was going through some articles yesterday, which mentioned its imp to do hormonal detox once in an year which cleanse all reproductive organs. Anyway I just finished my mc. Need to do a detox for a week. I always do detox in a month after I finish my period with beetroot juice on empty stomach. It's better you do all checkups if u hv any doubt. But don't neglect lilly12255.

AnnieAnnie profile image
AnnieAnnie

If your periods have become more painful than they normally are, i would go to your GP to discuss this. If it is not your normal it could just be a blip or indicate a change. But ultimately it is important that if you are concerned, you speak with your GP who can diagnose you or send you for further testing if necessary. I too have had painful periods from the age of 12, again went on the pill which masked my problems also. I came off the pill in 2011 and have been ttc for almost 9 years and during that time have had 3 ivfs and lots of tests, scans etc. I have tried pushing over the years to have investigations into my excruciating painful periods and finally last year I had scans that were suggestive that I have adenomyosis (can be seen on a scan but not fully diagnosed until a hysterectomy is carried out). I have continued to push and and finally (moved to live in Australia at the end of 2019) am getting a laparoscopy, hysteroscopy and another hsg where they will flush my tubes. As the others have said, keep a diary of your pain and any other symptoms which can include, change in bowel movements (lose or constipated) and pain when going, brain fog, pain in the pelvic area, back pain, leg pain, excruciating period pain, bleeding lots, anemia, severe bloating, pain when ovulating, pain during sex, feeling nauseous, being sick. I didn't know why I had so many things happening to me when I got my periods and it wasn't until endometriosis became more talked about that I was able to put the symptoms together. Not once did any of my GPs ask me if I had any other symptoms. If you pain persists be persistent with your GP in getting to the bottom of your pain. Good luck xx

Hi Lilly, the others have given you great advice, it could be something like endo or it could be nothing to worry about. I have a lot of fibroids and they have always caused heavy periods but no pain.

However in my experience I have found that each IVF cycle has changed my periods. So after about the 3rd one I got terribly painful periods but after the 4th and a MC they changed again and were heavier but less painful.

I think its worth getting checked out, but just wanted to say don't panic it doesnt necessarily mean there is a problem xx

Lilly12255 profile image
Lilly12255

Thank you all for tour answers. I contacted my GP who said he was not willing to investigate further at this stage and that a scan would show endometriosis. Thought this is false according to the info I got here. Am I unlucky or are they all like this?

in reply to Lilly12255

Your GP is most definitely wrong- my endo only showed via laparoscopy. The only way to diagnose endo is a lap. GPS are great but are not experts in that field. I’m sorry you got that reaction - I got dismissed many times by drs over pain & horrendous periods if I had a £1 every dr said “it’s part of being a women” well I would be rich! This is why it gets so undiagnosed much more awareness is needed- GPS are a first port of call & they need to recognise symptoms instead of having such old fashioned views. My fertility doctor was the one who diagnosed my endo if it was down to my GPS I still wouldn’t be diagnosed. Can you contact your fertility clinic over your concerns? Would seeing a endo consultant privately be an option that could transfer you to the NHS waiting list for a laparoscopy? As I said before there is a symptom/pain diary you can download from endo UK. I wish I pushed harder for my diagnosis sooner- nearly 6 years of ttc, 3 years of abnormal periods that no gynae could explain, it went undiagnosed for far too long. Trust your instincts- you know your body better than a medic. Wishing you lots of luck xxx

Lilly12255 profile image
Lilly12255 in reply to

So if I pay for a private laparoscopy, I cam still be treated NHS?

in reply to Lilly12255

No- if you pay privately for a consultation with an endo specialist they could transfer to their nhs waiting list for a lap. Most consultants work privately & for NHS need to find one that does both. I’ve seen ladies on endo UK do this when they haven’t got anywhere with their GP.. It can be a frustrating process to get a diagnosis. Good luck xxx

Rainbow_leopard profile image
Rainbow_leopard

Hi Lily, I am similar to you in that I have a painful start to my periods and then it eases up a bit. My periods were also painful when I was very young and then were masked by the pill. I was lucky in that my suspected endo alongside 10months of ttc were taken seriously and my gp referred me straight away. My endo was then formerly diagnosed at laparoscopy. The advice you have been given on here is good and they are correct in saying it usually does not show on an ultrasound (endometriomas sometimes show up but not always, plus you can have endo without any endometriomas). My advice would be to push your GP and see a different one if you can. Use the information on Endometriosis uk to help you. It might not be endo in your case but they need to investigate. In my case it has caused me massive issues with fertility. Good luck x

Ranchu90 profile image
Ranchu90

I had very painful periods, but that painful that I was every month on emergency room. I been to a private gynaecologist and he found a cyst that was causing the pain. It was 3.5mm. They put me on birth control pills...

The doctor also mentioned, if you have painful periods (but not excruciating pain) means that you are ovulation and producing right hormones during a full month 🤷‍♀️ Now you know better how painful are yours...🥺

my cycle are not that painful anymore, with 2 paracetamols I can kill the pain

Lilly12255 profile image
Lilly12255

I usually did mot even notice periods, though not on the pill. And this time? I was really feeling strong pain in my ovaries area. Had to lie down all day. Did not date to take any pain killer. It’s not something I ever had in the past 10 years, so I am worried that something went wrong suddenly. I am doing egg collection now, but it’s not the first one and I had no pain before. My ivf gyn has not seen any cyst.

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