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Polcystic kidney disease and methotrexate

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AndreaR_01
Posts: 8
Joined: Sat Sep 25, 2021 7:35 am

Polcystic kidney disease and methotrexate

Post by AndreaR_01 »

Hi everyone,

So yesterday I found out I have an ectopic pregnancy at 6 weeks. When the cramps and bleeding started on Thursday, I thought it was miscarriage. An ectopic pregnancy wasn’t something that had entered my mind.

Obviously I’m distraught and trying to process it all 😢

My pregnancy hormone levels are still high so going back to the EPU tomorrow to do more bloods.

I’m just weighing up the pros/cons of methotrexate and surgery. I have poly cystic kidney disease, and while my kidney functionality is fine and the dose of methotrexate would be low, I’m not sure I feel comfortable with using that option.

I feel like I’m swaying more towards surgery but it feels so extreme. I’m also 37 so worry about my fertility. Although I fell pregnant straight away with my daughter 3 years ago, and in fact this pregnancy within 2 months.

Has anyone else got polycystic kidney disease? Or if not, what’s your experience of methotrexate/ surgery?

Thanks xx

EPT Host 20
Posts: 3142
Joined: Thu May 31, 2012 10:58 pm

Re: Polcystic kidney disease and methotrexate

Post by EPT Host 20 »

Dear Andrea,
I am so sorry to hear of your ectopic pregnancy and loss,
When deciding upon methotrexate or surgery, it is often a joint decision between your wishes and what is best for you medically- how high your hCG levels are, If there is any free fluid in your abdomen and past medical history. I would suggest having an in-depth discussion with your medical team.

From what I understand, studies suggest the chances of pregnancy are about same irrespective of type of treatment - Expectant management or medical management or surgery. Methotrexate isn't as invasive as surgery but it can be a long drawn out process waiting for hCG bloods to reduce.
The chances of a further ectopic after a first in UK is 10%. So that's 90% chance of the embryo being in right place next time.
While generally it is possible to conceive after an ectopic pregnancy, the amount of time it takes varies from couple to couple. Factors include age, general health, reproductive health and how often you have sex, among other things. It may be comforting to know that 65% of women are successfully pregnant within 18 months of experiencing an ectopic pregnancy and some studies suggest this rises to around 85% after two years.

Sending much love,
Karen x


The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards
**************************************************************************
During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team
***************************************************************************

AndreaR_01
Posts: 8
Joined: Sat Sep 25, 2021 7:35 am

Re: Polcystic kidney disease and methotrexate

Post by AndreaR_01 »

Hi Karen, thank you so much for your reply. After discussing it with the consultant, who reassured me that my kidney and liver functionality is fine, I’ve decided to go for the methotrexate option.

I know it’s a more drawn out process but it’s less invasive and I don’t need to lose a tube.

AndreaR_01
Posts: 8
Joined: Sat Sep 25, 2021 7:35 am

Re: Polcystic kidney disease and methotrexate

Post by AndreaR_01 »

So after having methotrexate and having zero side effects/ feeling fine, on day 7 I started with pain again on my left side.

I had my day 7 blood test and despite my hormone levels dropping nicely, the mass in my tube had grown, there was free fluid and the tube was twisted. So I ended up having surgery to remove my tube on Sunday night. It all happened so quickly 😔

I’m recovering at home and feel tender/exhausted. How long should I be off work? Although I work from home, I don’t think I’ll be ready next week x

EPT Host 20
Posts: 3142
Joined: Thu May 31, 2012 10:58 pm

Re: Polcystic kidney disease and methotrexate

Post by EPT Host 20 »

Dear Andrea,
I am so sorry to hear of the ordeal you have been through.
This is the general information I pass on to ladies following surgery.

Experiencing an ectopic pregnancy is a huge ordeal and you are in the early stages of recovery. Your body needs time to heal from your surgery which is in itself a gruelling task. You have also had to process the loss of your baby and been through an immense rollercoaster of emotions - all of this will take time to come to terms with.
You should take it very easily for about six weeks after surgery. Your body will be using its energies to heal internally. It is normal to feel physically and emotionally exhausted during this time and please do be kind to yourself. Recovery can take time and some days will be better than others, one day you maybe ok and the next you maybe in discomfort or more emotional. This is perfectly usual and the healing process will go back and forth in this way for however long you need. It is important to listen to your body's signals and pain and feeling tired are your body's signs to tell you to rest. We suggest keeping a healthy balanced diet, drinking lots of water and resting. Once your wounds have healed, very gentle exercise such as a short walk can help, but please do take this slowly.

We generally advise after about six weeks you should be able to return to most jobs from a physical point of view. However, some women feel able to return prior to this, but I do think returning after just 2 weeks is a little soon.
Many women experience pain after surgery and this can be the case weeks or months after the trauma. Pain is the body's sign to rest and it is important to be guided by this and taking it easier if you experience discomfort.
In addition, it is worth bearing in mind that experiencing ectopic pregnancy is a very frightening experience and many women need to take time to help them deal with the psychological/emotional impact of the loss of their baby, being diagnosed with a life-threatening condition and undergoing major surgery. Please speak to your GP about having further time off work if required.

Above all be kind to yourself and allow time to grieve, to heal both physically and emotionally.
We will be here for you for as long as you need,
Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards
**************************************************************************
During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team
***************************************************************************

AndreaR_01
Posts: 8
Joined: Sat Sep 25, 2021 7:35 am

Re: Polcystic kidney disease and methotrexate

Post by AndreaR_01 »

Thank you, Karen. Xxx

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