Could it be endo?

sirensong · 21/07/2024 22:43

Definitely see your doctor if your periods are excruciating, independent of fertility considerations. Ask for an ultrasound and gynaecology referral. It could also be fibroids.

Butterfly8719 · 22/07/2024 14:33

hiya, definitely see your doctor - I have just had excision surgery for stage 3 endometriosis and symptoms very similar to you. Best to get the ball rolling now as you are close to 1 year. Wishing you lots of luck xx

Lovedatforme · 22/07/2024 14:48

I have endo and had similar symptoms. Definitely see a dr about it, periods shouldn't be that painful it's not normal x

mountainhighhh · 22/07/2024 19:25

Choc29 · 21/07/2024 22:29

Hi I'm on cycle no 8 ttc. I have extremely excruciating painful and heavy periods and bloating. Pain in certain sex positions and occasional bowel problems. My cycles are generally 27-29 days long but I can get the occasional spotting in-between periods and it can be really early and late. Bleeding can't last anything from 4 days up to 2 weeks and I also had a period that lasted a whole month back in 2022 before I came off contraception. I've had painful periods all my life. My periods started when I was just 11 and I was put on the pill aged 12. I've been constantly on hormonal contraception up until 2022. I don't know if I'm just going a bit crazy as the TTC is taking longer thant I expected, but do you think it's worth seeing a doctor to see if I have endometriosis or should I just wait a few more months until I've reached the 1 year mark. I've attached a picture of my bloated stomach. Bloating gets worse around ovulation and during my period. Picture was taken at CD7 and isn't as bad as it usually is further into my cycle.

I was the same as you and kept putting it off and off as every time I've been the docs in last 10 years they've put it down to need to change type of contraception and shrugged it off.

I said enough enough a few months back as getting no where TTC and the mix of the excruciating pain during periods and mental side of being unsuccessful that month is utterly defeating me. I'lll have surgery to remove next month and my gyno is also a fertility doctor and is doing all she can to help and improve chances moving forward post surgery. She has been an absolute blessing and helped me and hubby mentally also knowing that she really is assisting. The best way to explain is the toxic cells of endo are blocking our tubes currently, get them cleaned up and we should be the most fertile ever been!

Original poster

Choc29 · 22/07/2024 19:38

Hi thank you everyone for your comments. You've all been so helpful. I will call the doctor in the morning. Xx

OP posts:

Butterfly8719 · 22/07/2024 19:54

@mountainhighhh I’m so glad you’re getting it sorted. I’ve done 3 rounds of ivf which all failed, was always told by my fertility doctor to not have surgery as it won’t help the outcome of ivf. I went ahead with the surgery anyway in May as I was in so much pain - I fell pregnant naturally after my first period post surgery. First positive test I’ve had in 6 years! I’m still early as only 4w2d so anything could happen, but it just goes to show that even ivf wasn’t the answer for me 🥹 wishing you all the best xx

Butterfly8719 · 22/07/2024 20:00

Choc29 · 21/07/2024 22:29

Hi I'm on cycle no 8 ttc. I have extremely excruciating painful and heavy periods and bloating. Pain in certain sex positions and occasional bowel problems. My cycles are generally 27-29 days long but I can get the occasional spotting in-between periods and it can be really early and late. Bleeding can't last anything from 4 days up to 2 weeks and I also had a period that lasted a whole month back in 2022 before I came off contraception. I've had painful periods all my life. My periods started when I was just 11 and I was put on the pill aged 12. I've been constantly on hormonal contraception up until 2022. I don't know if I'm just going a bit crazy as the TTC is taking longer thant I expected, but do you think it's worth seeing a doctor to see if I have endometriosis or should I just wait a few more months until I've reached the 1 year mark. I've attached a picture of my bloated stomach. Bloating gets worse around ovulation and during my period. Picture was taken at CD7 and isn't as bad as it usually is further into my cycle.

If your GP is no help I can recommend the most incredible private Endo consultant. He is London based though.xx

mountainhighhh · 22/07/2024 23:19

Butterfly8719 · 22/07/2024 19:54

@mountainhighhh I’m so glad you’re getting it sorted. I’ve done 3 rounds of ivf which all failed, was always told by my fertility doctor to not have surgery as it won’t help the outcome of ivf. I went ahead with the surgery anyway in May as I was in so much pain - I fell pregnant naturally after my first period post surgery. First positive test I’ve had in 6 years! I’m still early as only 4w2d so anything could happen, but it just goes to show that even ivf wasn’t the answer for me 🥹 wishing you all the best xx

This is such an amazing story to read and see! I honestly don't know why they put surgery off so much. Wishing you all the luck in the world for a sticky one and that it's your time after so much trauma, I can't wait to follow your story 💛

Butterfly8719 · 23/07/2024 07:25

mountainhighhh · 22/07/2024 23:19

This is such an amazing story to read and see! I honestly don't know why they put surgery off so much. Wishing you all the luck in the world for a sticky one and that it's your time after so much trauma, I can't wait to follow your story 💛

Show quote history

stories like this always gave me a little bit of hope so I hope it helps 💖 yes I really don’t know why they advise against it, I had to go privately in the end, but it was the best decision I’d made! Thank you and lots of luck to you xx

Original poster

Choc29 · 27/07/2024 23:17

Just a quick update. I've still not got a gp appointment and I'm considering going privately but I'm worried about the cost. Currently ovulating and feeling like my stomachs about to explode.

OP posts:

Butterfly8719 · 27/07/2024 23:33

Choc29 · 27/07/2024 23:17

Just a quick update. I've still not got a gp appointment and I'm considering going privately but I'm worried about the cost. Currently ovulating and feeling like my stomachs about to explode.

Looks so painful, poor you, ovulation was always the worst for me. An initial consultation will cost about £250 and then additional if they do an ultra sound. I would see a proper endometriosis specialist.xxx

Original poster

Choc29 · 31/07/2024 12:53

Just a quick update. I saw a gp. She thought it could be endo. We decided not to do the laparoscopy and keep trying without surgery. I don't know if I've made the right decision. Should I have pushed for the laparoscopy? She kept saying I'm still young (I'm 31). Xxx

OP posts:

Butterfly8719 · 31/07/2024 12:58

Choc29 · 31/07/2024 12:53

Just a quick update. I saw a gp. She thought it could be endo. We decided not to do the laparoscopy and keep trying without surgery. I don't know if I've made the right decision. Should I have pushed for the laparoscopy? She kept saying I'm still young (I'm 31). Xxx

glad you saw gp, personally I would go onto the waitlist as it’s so long anyway! I started TTC at age 31 - now 37, 6 years trying, 3 failed rounds of ivf and finally fell pregnant the month after surgery. If you’re in pain you should absolutely treat it and removal of endo increases your chance of spontaneous pregnancy. I had a lap at the age of 21 as well to diagnose endo, they didn’t remove any so it didn’t impact my fertility or AMH, it was just good to get that diagnosis so I could manage it.

everyone is so different and many people with endo do fall pregnant quickly, but if it’s been 6-12 months, I’d certainly investigate xx

sirensong · 31/07/2024 13:26

This is not an area of GP expertise. Ask for a specialist referral and let them assess you. Some endo can also be seen on a scan. They will be able to assess whether your ovaries are mobile etc. Try in the meantime but have the referral in play in the background.

SareBear87 · 31/07/2024 13:42

Sounds same as me and I have both endo and adeno - no problems with conception (fell preg within 12 months) but we do have issues with keeping them. Seems due to scarring/tissue thickness/etc. the embryo has blood supply issues and the pregnancy fails.
I've been pregnant 6 times and have only one DC.
I paid for a private diagnosis as I'd suspected it and then after 3 mmc was convinced!

If private isn't an option definitely as for a referral from your GP, and don't give up!

Original poster

Choc29 · 31/07/2024 13:43

Thankyou. I glad you eventually got pregnant. I did have an ultrasound scan about 2 years ago after a very long period and was all healthy looking but I know you can't really tell from an ultrasound. I'm also looking at acupuncture, thought it won't hurt to try. Xxx

OP posts:

Decaffe · 31/07/2024 23:42

Butterfly8719 · 22/07/2024 19:54

@mountainhighhh I’m so glad you’re getting it sorted. I’ve done 3 rounds of ivf which all failed, was always told by my fertility doctor to not have surgery as it won’t help the outcome of ivf. I went ahead with the surgery anyway in May as I was in so much pain - I fell pregnant naturally after my first period post surgery. First positive test I’ve had in 6 years! I’m still early as only 4w2d so anything could happen, but it just goes to show that even ivf wasn’t the answer for me 🥹 wishing you all the best xx

I had excision surgery for stage 4 endometriosis, after years of ‘unexplained’ infertility and failed IVF. I got pregnant naturally on my second cycle after the surgery, aged 40. My surgeon said the inflammation from the endometriosis meant an embryo would never have implanted.

@Choc29 if you have any savings I would wholeheartedly recommend you reserve them for private surgery with a BSGE accredited surgeon, as opposed to going for IVF. NHS waiting lists for all gynaecology at the moment are shocking.

Best of luck 😊