Spotting from endo whilst TTC: Hey all I... - Endometriosis UK

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Spotting from endo whilst TTC

Siothew profile image
16 Replies

Hey all

I have stage 4 endometriosis. I have one blocked Fallopian tube because of it, retrovaginal endo and severe endo on my bowel. We’ve been TTC for 9 months now and nothing (my husband has severe morphology as well) but I get spotting on and off which I imagine is the endo. I’ve had my hormones checked twice, all normal. This month, the spotting has been the last two mornings only, when I get up it’s bright red blood suddenly coming out. Not loads just enough to know and have to wipe and then not at all the rest of the day. I’m currently 8 days past ovulation and not due to start period until next Tuesday. Im regular 28 days every month. What I want to know is, has anyone got pregnant whilst spotting every month? Every month I get it I’m like great I’m not pregnant now again. And also, does anyone know why this is happening or have any comments about it?

Thanks all!

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Siothew profile image
Siothew
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16 Replies
Lindle profile image
Lindle

I don't know about the spotting but it would usually be due to hormone imbalance which is a feature of endo. However, any bleeding that isn't normal for you should be discussed with your GP.

With regard to you trying to conceive, although some do get pregnant with stage 4 unfortunately the chances of natural conception are statistically very low as the ovaries are likely pulled out of place and stuck down away from the tubes. There are also other reasons why endo might contribute to infertility. With one blocked tube as well I think the chances are going to be close to zero. What is the plan with your endo centre? Most women with stage 4 will have a lot of pain and will have excision for it which will usually give benefits in terms of improving fertility as well. It is perhaps a more difficult decision when there is no significant pain and excision is considered to improve infertility alone as such complex surgery carries what can be significant risks. After 9 months are they not having a discussion with you about surgery versus IVF?

Siothew profile image
Siothew in reply to Lindle

Hey Lindle

I got told by my endometriosis surgeon last year that one tube was fine and the other tube was now blocked from endo. He advised that actually it didn’t make a huge difference in terms of conception as the other tube can catch the egg so although it reduced fertility, it didn’t say reduce it by 50%. Additionally, he said any surgery would cause more potential risk of damages to the ovaries, womb etc and that I should have surgery post having children. I used to have a lot of pain but I saw a private dietician and she put me on supplements and I’ve had no pain for 10 months now! Xx

Lindle profile image
Lindle in reply to Siothew

If your scan has shown that the other ovary is perfectly placed in relation to your other tube then yes that might be true but I'm not sure where he would have got a statistic of 50% from. If you haven't conceived by 12 months you will be considered infertile and it would then be usual to look at surgery or IVF. If the specialist centre you are with still tells you to carry on trying before considering surgery then I would say a second opinion from another centre would be something to consider. You need to be conscious of the passage of time during which your chances of natural conception might decrease naturally depending on your age and the endo might be progressing to make any ultimate surgery more complex.

Siothew profile image
Siothew in reply to Lindle

Hey

Thanks for the message. Yes so that is the plan. I have an update meeting with my Gynae for October (we will be a year of trying in November) and last time he said if we didn’t conceive within 12 months he would do an immediate ivf referral letter for me. Obviously hoping we don’t have to go through that but understand there is a decent chance of that happening! Yeah endo seems to be on my left side weirdly so right side and womb itself seems to have no endo. I’m 32 so hopefully still have a bit of time xx

Lindle profile image
Lindle in reply to Siothew

Severe endo is almost always left sided.

R4P_ profile image
R4P_ in reply to Lindle

Really though! I wonder why?

Lindle profile image
Lindle in reply to R4P_

There are two theories - it is thought that because the sigmoid colon enters the pelvis on the left side this might form a 'shelf' on which endometriotic cells could collect combined with the direction of the circulation of peritoneal fluid within the peritoneal cavity favouring their collection on the left side. If you look at a diagram of the ASRM staging you'll see that stage 4 is characterised by complete obliteration of the POD with dense left sided ovarian fibrosis.

R4P_ profile image
R4P_ in reply to Siothew

Do you mind me asking what supplements do you take?

Siothew profile image
Siothew in reply to R4P_

Sure so I should probs say that this works for me based on having seen a nutritionist but I take:

Wild nutrition (WN) omega 3, WN endo complex, WN fertility, WN folic acid, Vitamin d spray and one called Dim by Nutri Advanced. I wish I could work out which one has worked the most (I’m thinking maybe the Dim but not sure). Oh I also take a milk thistle liquid you put a couple of drops in your drink from Holland and Barrett.

I’ve never had pain free as much as I have this past 9/10 months- it’s been amazing! I should also say I’m super healthy with my diet. Hardly any sugar, no caffeine, occasional alcohol, lot of veg, fruit chicken and fish Xx

R4P_ profile image
R4P_ in reply to Siothew

Thank you so much I see a specialist soon definitely going to ask about supplements! And yes diet is so important! I’m so happy you’re pain free.

Your story sounds just like mine.

I will keep praying for us endo girls!

Siothew profile image
Siothew in reply to R4P_

Me too! Gta get some luck somewhere along on the line surely! Xx

Trinity613 profile image
Trinity613

Hi, I was recently diagnosed with endo , not severe as it is only behind my rectum. I had been ttc for 11 months and got pregnant at the 12th month! Coincidentally it was the exact month I started taking NAC supplements, they are supposed to help with fertility and improve egg quality. I am currently 5 months pregnant and still taking the supplements as they are safe even during pregnancy. I guess you have nothing to lose trying. Wishing you the best of luck xx

Siothew profile image
Siothew in reply to Trinity613

Thank you! Congrats on your pregnancy xx

Trinity613 profile image
Trinity613 in reply to Siothew

Thank you! I hope it works for you very soon xx

Roobs33 profile image
Roobs33

Heya,

I have severe endo stage 4 and on bowel. I also only have one working tube. I conceived my now 4 year old daughter before my diagnosis and she took 1.5 years to conceive. After trying for a sibling for almost a year I had increasingly painful periods with clotting and spotting in between cycles. I then was diagnosed via laparoscopy and had a huge cyst on my left ovary removed and ovaries etc all freed up. 6 months after this it was discovered that my right tube was blocked. I then had another surgery to clip this. I was told by my endo consultant and also a fertility specialist that it is advised that the tube be clipped or removed due to the fluid being able to run in and out of the womb. Apparently the fluid can have a very negative impact on implantation success. My sister who also has Endo has two blocked tubes and was never advised this as they didn’t think they were blocked due to the endo! Myself and my husband have been doing IVF now for a year. About to have an embryo transfer tomorrow! Something that helped me reduce pain and helped my cycle was doing acupuncture. So this might help with spotting! Are your periods ok? I guess trying to get your cycle as flowing and healthy as possible could help. My periods are still very painful for the first day due to the bowel endo. But I have no clots now and blood seems fresh (sorry for TMI).

Is your husband on supplements for his sperm? As this could help too!

Feel free to ask anything and good luck on your journey! If you are doing IVF it’s good to start before you’re 35 as egg quality is meant to be much lower. That’s not to say that plenty of people have success past this but stats show that xx

Siothew profile image
Siothew in reply to Roobs33

Hey

Thank you for replying!

I have pain free periods since going on supplements last year (thank god cause I was in crazy amounts of pain before and they often made me violently sick for hours) and I’ve always been 28 days regular. I have spotting towards the end of my cycle which is annoying. Im thinking of trying a progesterone cream and seeing if it makes any difference to me- feel like it can’t hurt to try! My husband has been on suppleness for his sperm a couple of months and given up caffeine and reduced booze and sugar so hoping that’ll improve! Im 32 atm so hopefully my eggs are okay but guess we won’t know until we do ivf. Amh levels were good though.

I wish you success for your ivf journey xx

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