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Irregular Bleeding after Trachelectomy

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J
Irregular Bleeding after Trachelectomy

Hi everyone

Just wanted to know if any of you have experienced bleeding through the cycle after trachelectomy. To be more precise I have had a trachelectomy about a year ago and ever since my operation I experience bleeding during my cycle. It is bright red and runny blood (not like period blood) and it starts aproximately 4-6 days after ovulation and it last for aprox. 10-14 days, but i have had months where i was also experiencing spotting pretty much at any stage in the cycle. I have regular check ups and my surgeon says I'm clear of cancer. And it isn't infection or anything like that. It is a cyclical patern of bleeding but not period (probably related to hormones). I have always had regular periods before my op and never had any other bleeding (even when before I had cancer I never had bleeding outside of my normal periods).

We are trying to have a baby but i feel unless I can stop this bleeding it will never happen, and my fertility specialist has never delt with anyone post-trachelectomy and doesn't offer me much advise.

If any of you experienced anything similar can you please let me know.

Thank you

EmJess

Hello!! I had a Trachelectomy in July last year. I experience bleeding mid cycle and after sex. I've spoken to my consultant about it and he said it's quite normal ... Abit rubbish for us though :( I'm going to keep pestering him about it though. Going back to see him soon. He said because everything isn't protected by the cervix now that the cells are more delicate hence the bleeding. I've also spoke to a couple of other trach ladies and they've experienced the same. I would still pester your consultant in regards to it! It's not nice! Take care Em xxxx

First Smear, age 25 - abnormal 06/03/2013

Colposcopy & 4 biopsies 26/03/2013

Lletz Procedure 02/05/2013

Diagnosed CC 17/05/2013

MRI 04/06/2013

Trachelectomy & Lymph Node removal 10/07/2013

ALL CLEAR!! 19/07/2013

J

Hi Em

Thank you very much for your reply. You have made me feel a lot better and "normal" again :) I'm at the same stage with my consultant. They have told me at the beginning that it would settle down, but i feel after a year of waiting, I have been patient enough. I'm really going to put the pressure on, to get it sorted. The problem is that we are trying to get pregnant and I believe that if it is my endometrium breaking down too early, then there is no chance of implantation.

My mid-cycle bleeding is a full flow, not just spotting. I also bleed after sex but that one is more like spotting. If you don't mind me asking, is your mid-cycle bleeding heavy or just spotting? I am seeing my consultant in mid May, so if I find out anything I'll keep you posted. I'm also going to ask him to recomend a fertility specialist that has some experience with post-trachelectomy patients. Because the fertility specialist I'm seeing at the moment just tries to apply mainstream ideas to me and I think I need someone to think "outside the box".

Please stay in touch, and once again thanks for the reassurance - just what i needed :)

Take care xxx

EmJess

Hello :) i only experience spotting mid cycle not a full flow. I'd definately keep on at them. You shouldn't have to put up with that! I am know where near the trying to get pregnant stage so I don't know how my consultant is with it all. But I think you're doing the right thing by asking for a more experienced fertility specialist! I found a few happy stories on the abbeylooper forum.. Maybe have a look? Take care :)

First Smear, age 25 - abnormal 06/03/2013

Colposcopy & 4 biopsies 26/03/2013

Lletz Procedure 02/05/2013

Diagnosed CC 17/05/2013

MRI 04/06/2013

Trachelectomy & Lymph Node removal 10/07/2013

ALL CLEAR!! 19/07/2013

porkins79

Hiya

I keep meaning to reply to this post, I hope i'm not too late. I am 18 months on from a trachelectomy and also experienced random "spotting" for the first 12 months after my operation.  Initially it was about 7 days before my actual period but gradually this got less and less.  1 year on, pretty much to the date (I remember as it was my wedding night!) my period came without ANY spotting at all and has been like that ever since.  I googled every site, worried myself rigid, saw about a billion doctors but was always told it was normal and highly likely just hormones (as I came off the pill when I was diagnosed)  so my only words of wisdom would be to try not to worry too much, it sounds hormonal and will sort itself out.  ooooo and also, I took up yoga - it may be a coincidence but as soon as I did that, that's when the spotting started to lessen.

All the best with your recovery and keep smiling - good luck on your fertilty journey! xxxxx   

Stage 1b1 diagnosed after routine smear Nov 12 (age 33)

Radical Tracelectomy Dec 12

All clear! 

J

Hi porkins79

Thank you so much for your message. Sorry it took so long to reply, as I was away. What you are describing sounds so similar to me. Other than mine is more of a bleed rather than spotting. But if I am completely honest it has got a bit better, because at the beginning i used to be excessive and now it is just normal or sometimes heavy. So a small improvement I suppose :) But if you are right, than mine will hopefully also clear up, but it might just take a bit longer. And I will consider the yoga as well - after all it can't be a bad thing ;)

Thank you once again for all your advise and reassurance and good luck with your recovery and fertility (if you are trying - just guessing since you've been reading the fertility section) xxxxx

porkins79

Also - I am in the opening throws of seeing a fertility speciist in North London who knows about Trachelectomys... if you want his details, just let me know and I can PM you.  I could also save your pennies and let you know what he said!

xxxxx

Stage 1b1 diagnosed after routine smear Nov 12 (age 33)

Radical Tracelectomy Dec 12

All clear! 

J

Hi again

If you could PM me the details of the specialist you are going to see. At least I can look him up. Would also be very kind of you to let me know what you find out if you manage to see him.

Thank you so much for all your help. And wishing you all the luck xxxxx

lavi5h

Hello,

I have also experienced spotting/ bleeding after a trachelectomy (3 years ago) and really painful periods. The doctors also told me that it was probably hormonal and not to worry about it and the consultant said it was normal too. I felt like a right hypochondriac as everyone was quite blase about it! We were disheartened too as we have been trying for a baby for a year and a half. After being refered to the fertility clinic they discovered that my 'cervical opening' had practically closed up due to scar tissue and was only 1mm! I had cervical dilatation last week... so hopefully that will make a difference. By all accounts spotting and bleeding do seem to be quite normal unfortunately :s Hope you ok and that it all settles down but speaking to a specialist will help. It doesn't seem like there is much known about the after effects of trachelectomys and there isn't much info out there.  Wishing you all the best x x x

July 2011- Stage 1b1 Villoglandular adenocarcinoma,

August 2011- Bi-lateral Lymphadenectemy and Trachelectomy,

June 2014- Laparoscopy and cervical dilatation

 

J

Hi lavi5h

Thank you very much for your support and for sharing your experience. It makes me feel a lot better to know that I am not the only one. It has helped me to calm down and accept that it is indeed "normal" to be bleeding between periods after trachylectomy. It's a lot easier to hear it from people who experienced it than hearing it from doctors. I don't really know how big my cervical opening is, as i never had it checked. But I would think it's quite normal for it to close up after trachylectomy with all the scarring. I also have really painful periods since the tracelectomy (mainly the first day). We are going to carry on trying to concieve naturaly (for now). I know I haven't got much time left to just wait and see, but I am not ready (mentaly and physicaly) to start any fertility treatment yet. I'm sure I might change my mind few months down the line.

Wishing you all the luck with the baby stuff. Only a person who has been through it can trully understand how it feels.

And thank you again for taking the time to write. It brings me comfort to know I am not alone xxx

KatieLives

All I can do is tell you what I know and what I would do. I hope it can help you all. Since Vitamin A helps mucous membranes & skin heal and Vitamin E helps heal/remove scar tissue, it just might help you to consult a nutritionist. Maybe their is one on your healthcare team.

Wishing all of you the very best. Hugs

  • Diagnosis (Dx) November 2013 Stage 3 Inoperable
  • PET scan December - Dx changed to Stage 4 with metastasis
  • Radiation December - was told Chemo Oncologist could not help me/would 'try'
  • January 2014 told all Tumors arrested - Lymphedema hip joint/leg/foot
  • Chemo started January 2014 to 'try' Reducing Tumor load
  • March and May - All scans show continued tumor reduction
  • April Chemo Oncologist said, 'As you get well...' four times!
  • Sixth round Taxol/Carboplatin May 2014 - All blood counts too low
  • Temporary Chemo vacation June-August 2014/Then ct scans...

My Mantra:  Live - Gently

J

Hi KatieLives

That sounds like good advise but I would have to go easy on the Vitamin A, as I am still trying to get pregnant and it is not advisable to take it. But I will definately speak to my medical team to find out what i can do to improve the healing of my cervix after surgery.

Thank you for taking the time to write.

Wish you all the best xxx

Holly_Louise1712

Hi lovely, hope you don't mind me messaging you. I had trach November last year and have revcently started experience the same spotting 4-6 days after ovulation. I am also trying to conceive and wondered if you ever found and soloution to this problem as it very disheartening each month. 

Thanks, Holly xx

 

J

Hi Holly,

Thank you for your message. I'm affraid it's not all good news. I am now 7 and a half years after my trachelectomy and I'm still having issues with the bleeding and unfortunately haven't managed to get pregnant at all in all that time. The positive thing that I can assure you with is that my pre-period bleeding used to be very heavy (with clots) and now it is just 4-6 days of spotting before my period. It makes me think that if you are spotting 4-6 days now, there is a fair chance that it might reduce to next to nothing over time. I have been to see a lot of consultants and fertility specialists over the years, but so far no one has been able to explain what it is and what causes it. It's most likely a side effect of the surgery. I found that because it follows a patern of the period cycle and stops after the period, every consultant I've spoken to has told me not to worry about it as it is probably hormonal. But of course I did worry because I didn't want to end up childless. I still have bad days when I think why me, but coping with it does get a bit easier with time. I have also been keeping a detailed period calendar and I have manage to establish the patern the bleeding follows, which helps me plan my life around it. 

I'm sorry I don't have the answers you are looking for, but you are not alone and I completely understand how you feel.

I wish you all the best luck in the world.

Stay well xxx

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