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Women's health

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Endometriosis?

27 replies

pinkmarshmalloww · 16/06/2023 09:17

Hi everyone. I'm looking for ladies that may suffer from this condition as I'm seriously considering the possibility I may have this. I want to see if my symptoms match anyone else's
• Period pain all the time no matter what day of my cycle I'm on.
• Painful ovulation.
• History with an ectopic pregnancy.
I'm also having episodes of severe pelvic pain.
This morning about 5am I woke up and went to the toilet and about 10 minutes later I was in agonising pelvic pain. The pain is just above my pubic bone and feels like an intense stitch along with lower back pain. Almost like trapped wind but severe. I was on my hands and knees rocking for about an hour before it subsided. Now I'm left with the after pains of feelings extremely bruised and sore. This happens spontaneously about once a month at the moment. I'm 4DPO so it doesn't seem related to a certain time in my cycle. Although last month it was whilst I was ovulating. I have regular 28 day cycles and periods aren't too bad or painful. My left side also feels bruised now and I've had prev surgery to remove that Fallopian Tube due to Ectopic.

OP posts:
Jennifer89 · 16/06/2023 10:22

It sounds like it could be from symptoms I have seen online. I recommend going to specialised Gynaecologist (may be worth bypassing NHS if possible to pay private), they will likely recommend a laparoscopy.

I am due to have a laparascopy in August

Laura23FE · 16/06/2023 10:34

I have endometriosis, my pains come when I’m due on my period/am on my period. The pains you describe sound the same. The pains are so bad they make me sick.
can’t help on the ectopic pregnancy part though as my tubes are blocked with endo tissue so I have never got pregnant naturally however I am now pregnant with my first baby after having IVF 🥰

yaboreme · 16/06/2023 10:40

@pinkmarshmalloww I suffer with endometriosis and the symptoms you have sound familiar.

The wind one in particular, it's such a severe pain but it will subside eventually. I was diagnosed in my 20's and one of the things that happened a lot was that I used to get pain so bad that I would pass out. It was always low down inside each hip I would say, and low back pain. I'd go shaky, hot and then pass out.

If you can see your GP and explain your symptoms they may be able to prescribe some medication mefanemic acid in a high dose helped with the pain. But you do need further investigation to ensure that you get the correct diagnosis. If you have had previous issues then I think that you are well within your rights to ask.

Sometimes it feels like you have to push for help, I was fobbed off for years until eventually I had a laparoscopy in which I was diagnosed officially. I was also told by one gp that it would all disappear once I had children which it absolutely hasn't.

Sorry you are going through this it's tough, if you have any questions feel free to ask.

Flowers
AttilaTheMeerkat · 16/06/2023 12:04

Your symptoms seem akin to endometriosis being present. Any symptoms that are cyclical in nature and or get worse up to and including menses should be checked out to determine if endo is present.

You should be under the care of a gynae; such issues are well outside a GPs remit. If finances allow I would pay for an initial consultation as a private patient; this is also because gynae waiting lists on the NHS currently are miles long. I would also suggest you keep a daily pain and symptom diary; this will also give the gynae clues.

You will need to be persistent in order to get answers; do not let the GP fob you off with mere pills. You need to find out exactly why this is happening and treat it accordingly.

pinkmarshmalloww · 16/06/2023 16:07

Thank you for your comments
@Laura23FE wow congratulations that's brilliant news ❤️
I have noticed that I don't experience these pains whilst either pregnant or on contraception and I'm currently off contraception.
It would help if I got a pathology report from my Ectopic Pregnancy to see whether Endo was found anywhere on or in the tube that was removed. But doctors are saying they can't find it anywhere 😩😩😩
The days been awful since this morning. I have the lingering pains in my lower stomach as if I've ran for days 🥺

OP posts:
User12340000 · 16/06/2023 16:13

Fellow Endo sufferer here.

Don't want to read and run but mine was diagnosed following an ectopic pregnancy and they found my tubes were blocked with more growths which they then removed.

This was done under private healthcare but I've been having an NHS nightmare with my diagnosis ever since.

pinkmarshmalloww · 16/06/2023 16:25

User12340000 · 16/06/2023 16:13

Fellow Endo sufferer here.

Don't want to read and run but mine was diagnosed following an ectopic pregnancy and they found my tubes were blocked with more growths which they then removed.

This was done under private healthcare but I've been having an NHS nightmare with my diagnosis ever since.

I'm almost thinking there's no point with doctors 🥺 they sent everything away when I had the surgery and I was supposed to get a pathology report a year ago. Now doctors are claiming they can't find one 🥺 I've even rang the hospital the surgery was performed and nothing so far 😬

OP posts:
User12340000 · 16/06/2023 17:43

That's awful @pinkmarshmalloww how could they lose something like that?

After a year of GP appointments I got referred to a gynaecologist and had another 6 month wait to be told my options are Mirena coil or nothing.

I don't want to have the Mirena coil so I'm now stuck if I stick with NHS.

I don't have the money anymore to pay to go private (my previous treatment was done under Heath insurance years ago) and for the cost of surgery privately.

GP was sympathetic and said NHS thresholds mean their hands are tied.

teaandtoastwithmarmite · 17/06/2023 09:58

I have endometriosis but in the form of ovarian cysts. I have been diagnosed with ibs in the past which is linked. Suffered with nausea and headaches during periods, pains obviously and irregular periods. Had laparoscopic surgery in 2019 and now have another 9cm cyst on my ovary.

Haveallthesongsbeenwritten · 17/06/2023 10:01

pinkmarshmalloww · 16/06/2023 16:07

Thank you for your comments
@Laura23FE wow congratulations that's brilliant news ❤️
I have noticed that I don't experience these pains whilst either pregnant or on contraception and I'm currently off contraception.
It would help if I got a pathology report from my Ectopic Pregnancy to see whether Endo was found anywhere on or in the tube that was removed. But doctors are saying they can't find it anywhere 😩😩😩
The days been awful since this morning. I have the lingering pains in my lower stomach as if I've ran for days 🥺

Pelvic pains are the worst. Are you on the pill by any chance? Stopping the pill has eased my pelvic pains. Ask your doctor for an ultrasound.

pinkmarshmalloww · 17/06/2023 10:17

@Haveallthesongsbeenwritten I came off the pill about 7 weeks ago and use nothing else x

OP posts:
Haveallthesongsbeenwritten · 17/06/2023 13:12

pinkmarshmalloww · 17/06/2023 10:17

@Haveallthesongsbeenwritten I came off the pill about 7 weeks ago and use nothing else x

It honestly got better for me without the pill, really hope it does for you

1fluffydoodle · 17/06/2023 21:16

Adenomyosis causes similar symptoms too

NervousBohemian · 29/07/2023 21:03

@pinkmarshmalloww how are you doing with your symptoms?

I came off the pill January 2022 and since then my periods have gotten more painful. Not necessarily heavier just agonising pain. But, I also have mild period pain throughout my cycle. I had a private scan last October where everything appeared normal other than the start of fibroids.

At my last smear 4 weeks ago the nurse actually examined me externally and internally but she couldn't feel anything. The only advice was to either go back on contraception or manage pain with otc meds.

AttilaTheMeerkat · 29/07/2023 21:17

Endometriosis cannot be ruled out. It is a common cause of ongoing and or severe period pain. Any pain that is cyclical in nature and or gets worse up to and including menses should be checked to see if endometriosis is present. It’s not normally detected on ultrasound scans however as these deposits are so very small. It’s usually detected via a keyhole surgery op called a laparoscopy.

I would keep a daily pain and symptom diary noting pain on a scale from 1-10. This can also give a gynae clues. If finances allow I would try and see a gynae as a private patient for an initial consultation.

Lovelyjubbbly · 01/08/2023 00:01

I hope this helps! I know exactly how u feel I have been diagnosed with endometriosis and I also have an endometrioma Cyst also known as a (chocolate cyst) and I also have Scar Endometriosis. After my section with my daughter 5 years ago the surgeon stitched my scar up and certain tissue was attached in with my scar at the time. My cyst is around 17cm and gets larger each month. The pictures below is the bruising of my stomach usually during ovulation or during my period. Currently I’m bed bound and get walk due to the pain and swelling of my tummy! I would recommend asking for some Ralvo patches and naproxen , cocodomal! These help but don’t currently take all the pain away Somedays doesn’t even help at all! But my endometriosis has spread to my hips and back and damaged the nerves on both! I hope this helps but what you are saying is exactly what I go through most days lucky if I get at least 4/5 good days out each month! 🥰 @pinkmarshmalloww

Lovelyjubbbly · 01/08/2023 00:03

@pinkmarshmalloww

dreamonlucid · 01/08/2023 00:57

Lovelyjubbbly · 01/08/2023 00:01

I hope this helps! I know exactly how u feel I have been diagnosed with endometriosis and I also have an endometrioma Cyst also known as a (chocolate cyst) and I also have Scar Endometriosis. After my section with my daughter 5 years ago the surgeon stitched my scar up and certain tissue was attached in with my scar at the time. My cyst is around 17cm and gets larger each month. The pictures below is the bruising of my stomach usually during ovulation or during my period. Currently I’m bed bound and get walk due to the pain and swelling of my tummy! I would recommend asking for some Ralvo patches and naproxen , cocodomal! These help but don’t currently take all the pain away Somedays doesn’t even help at all! But my endometriosis has spread to my hips and back and damaged the nerves on both! I hope this helps but what you are saying is exactly what I go through most days lucky if I get at least 4/5 good days out each month! 🥰 @pinkmarshmalloww

Please if you can google and see Peter Barton smith in London, to get your life back.

I put 8k on a credit card and had wide excision surgery 5 years ago, recovery took 12 months but I've been pain free since.

Please as a rule don't trust the NHS with this condition they laser women, called ablation which is the most unless treatment and results in multiple surgeries.

If you can go to an excision specialist and do your reading around the condition before some muppet in the NHS tells you it's the blood from your uterus 😬 leaking out.

I've heard it all, the coil cures it, take cancer injections.. it's all utterly nonsense there is no cure only highly skilled surgeons can find and remove the cells.

Greenglovess · 03/08/2023 08:29

I was diagnosed with severe deep infiltrating endometriosis in March this year after a laparoscopy. Six weeks later I was having further surgery to remove the endo from around my bowels, bladder, ovaries, uterus and basically everywhere in my pelvis.

My symptoms evolved over the years; I’ve always had very heavy, very painful periods, but after having children I started to get gastro pains, vomiting and diarrhoea, pain during sex. None of the usual contraception suspects worked so I kept pushing for a gynae referral, and after speaking to a very kind doctor who finally listened to the full story, I was put on the waiting list. In the end it was a 96 week wait between referral and surgery, but in the meantime I went to a private consultant who told me that I categorically couldn’t possibly have endo, because I have children and fell pregnant without any problems. So don’t think that going private is a golden ticket - it certainly wasn’t the case for me.

I would urge anyone with gynae pain to push and push your GP to get you referred to hospital where you can get access to specialists, because you can only be diagnosed with endo via laparoscopic surgery. GPs are quick to dismiss any kind of gynae pain with a prescription for the pill but that is rarely the answer for these complex issues. My hospital has an endometriosis clinic within so I’m now under their care moving forward and have regular appointments, and complete pain questionnaires to monitor symptoms. I’m not out of the woods yet as some of my symptoms have actually worsened since the excision surgery, and I’m now being investigated for Crohn’s disease/ulcerative colitis (which is more likely in endo sufferers) so it’s imperative you get these things checked, diagnosed and treated, because it could be masking other problems.

Happy to help if you want any more information. I feel very strongly about this having not been believed for so many years and finally getting diagnosed.

Lovelyjubbbly · 03/08/2023 11:58

@Greenglovess I am currently on the waiting list for surgery from a kind women at the gynaecologist. They actually diagnosed very quickly with my endometriosis through an ultrasound and MRI and CT scan. It was very noticeable so was diagnosed there and then. I have been waiting a long time it was actually a years wait to even be seen by the hospital with multiple referrals.

my endometriosis is wide spread also I have severe paid mostly on my hips and back were it is spread to some days I cannot even move out my bed.

Bonfire23 · 03/08/2023 12:10

Joining in as currently waiting for a referral
Had an ultrasound which showed numerous chocolate cysts, some over 7cm
Had to ring in sick to work yesterday as I was on all fours sweating and yelling in pain. Took paracetamol, naproxen and dihydrocodeine which didn't touch it. I was convinced my stomach was going to burst or I would just die with the pain it was so bad
It's dulled down today but still.. it's like trapped wind or that I really need to the loo pain

Greenglovess · 03/08/2023 13:32

@Lovelyjubbbly great to hear a positive story about accessing support - there needs to be more stories like yours (although not the original waiting… that’s no good at all). I had scans prior to my surgery but was told no definitive way to diagnose without surgery. So my first op was to diagnose and remove some, but the second op was to excise the rest. It was a gruelling few months. I hope you’re not waiting too long for your surgery.

@Bonfire23 that sounds absolutely dreadful, how frightening for you. Sounds serious enough for you to go to A&E - might help expedite your referral as your symptoms are so bad. Similar thing happened to my friend and she ended up in emergency surgery having cysts removed and all sorts… make sure you update your GP at least if symptoms change/worsen.

legsjusttoomanylegs · 03/08/2023 16:50

For anyone on here suffering I can recommend a TENs machine like they use in labour. It really helps takes my pain down to a much more manageable level allowing me some normality. I would compare my pain at times to the late stages of labour. The TENs helps me deal with that. Plus a massage gun for my back as my pain radiates through there. It helps with my hip pain too.

I hope everyone gets seen soon and gets some relief from endo. Flowers

Bonfire23 · 03/08/2023 18:20

Thanks @Greenglovess
The GP has given me the two tablets I can't spell... mefa acid and trans acid and was really lovely and said it sounds like quite advanced endo
Bizarrely it's day 5, my period has stopped Confused (usually lasts 8 days) but the pain is still there
I've been off work with it which is not normal at all for me

Namechange600 · 03/08/2023 18:43

Your symptoms sound like endometriosis

I was diagnosed with severe stage 4 endo after 25 years of going to GP, hospital etc
endo was everywhere- bowel, bladder ureters, utero sacral ligaments, peritoneum and diaphragm - everywhere (no wonder I had infertility and miscarriages)

also have adenomyoisis and pcos

the Endo on the bowel/bladder made going to the toilet extremely painful. Shooting pains constantly. Exhaustion and flu symptoms too from ovulation to end of period.

I had surgery to remove it. Look for shaheen Khazali online. He is amazing.

good luck xx