Rheumatology Pre-Pregnancy Counselling

You may remember that this time last year, I was seen by a neurology team for pre-pregnancy counselling. Unfortunately, this appointment was a complete disaster. It was like reliving a nightmare. You can read more about this in my pre-pregnancy counselling post. As my EDS symptoms have become more problematic over the past year, I was referred for rheumatology pre-pregnancy counselling. I thought I would share with you how this went.

Thankfully, this appointment was the complete opposite of my neurology pre-pregnancy counselling appointment. The consultant was thorough, professional and listened to me. I’m really glad that I requested this referral, as the consultant made me aware of potential complications that otherwise I would not have known about.

rheumatology pre-pregnancy counselling

Rheumatology Pre-Pregnancy Counselling: Midwife’s Appointment

My rheumatology pre-pregnancy counselling was split into two appointment, a month apart. This firs consisted of an appointment with a midwife. I had two midwifes in my appointment, one was a student. The midwives took a detailed history from me, which they would then pass on to the consultant. They also took a blood and urine sample to check for certain conditions, such as HIV.

Both midwives were lovely. They listened to my concerns, particularly about how bad my PMS is. The midwives tried to offer practical options to relieve some of my difficulties. Unfortunately I had looked into all of their options already. Despite them not being able to offer any help, it was extremely reassuring to be listened to and taken seriously.

The midwifes were knowledgable but also accepted (and told me) that I am the specialist in my conditions. They didn’t talk down to me or make me feel like I was exaggerating any of my symptoms. My midwife’s appointment lasted three hours, because they were so thorough and wanted to get to know me as a person, as well as a patient.

Rheumatology Pre-Pregnancy Counselling: Obstetrician’s Appointment

The consultant was fantastic. She was prepared for the appointment, with an understanding of each of my conditions. She told me that she would not be happy with me being under the care of the local hospital during pregnancy, which was a huge relief for me. I trust the consultants at the specialist hospital but haven’t had great experiences with local hospitals. They just don’t understand my conditions.

The consultant talked us through some of the things we could expect during pregnancy. She made us aware of how limited my mobility may become and the type and level of care I may need post pregnancy. We discussed my PoTS and she has said that she would like my to see their cardiologist when I become pregnant. My PoTS consultant has told me that my condition won’t get worse and is likely to get better because of the increased blood volume. The obstetrician did not agree with this.

The Obstetrician also identified that I may be at a higher risk of rupture during labour. She told me that people with hypermobile EDS can be at a higher risk of this if they bruise easily and/or have heavy periods. As I have problems with these, the consultant is going to make an appointment for my with their haematologist when I become pregnant so he can assess my risk. The consultant explained that I will be offered a cesarian delivery and that we could decide on the best method of giving birth once I have seen the haematologist and he has assessed just how much at risk I am. She also said that we can change the plan at any time during pregnancy.

The obstetrician explained that the safest method of delivery for a baby is a vaginal birth. The next safest is a cesarian once the waters have broken. This is because the babies lungs have started to work. The consultant explained that the option with most risk for the baby is an elected cesarian, but she stressed that the risks are still extremely small. The consultant reassured us that the baby’s health and wellbeing is dependant on my health and wellbeing and that my safety is just as important. So if I need a cesarian then this is the safest option for both myself and my baby.

In terms of having a cesarian birth, the consultant was very on the ball. She knew that many people with EDS don’t respond to anaesthetic as effectively as ‘normal’ people do. She feels that a general anaesthetic may be best if I have to have a cesarian. The consultant is going to make me an appointment with the anaesthetist to discuss this, as well as my allergy to opioids. I’m going to keep an open mind on delivery methods and be guided by my professionals.

I felt this was a thoroughly productive rheumatology pre-pregnancy counselling appointment and I’m very glad I asked for it. The rupture sounds scary, but I’m very glad that I know I will have this decision to make before I become pregnant. I think finding out when pregnant would be rather overwhelming.

The consultant has asked me to create an information sheet of the main things people need to be aware of when treating me. I’m still thinking of how best to do this, but I’ll share it with you when it’s done as I think it would be useful for everyone with complex health conditions to use to liaise with medical professionals in an emergency.

I really hope this post was helpful. It’s such a relief to have had such a positive appointment after my awful experience of neurology pre-pregnancy counselling.

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Tania Jayne

  • Melissa ♥

    I’m so glad this appointment went so well for you and that the nurses/specialists you saw were nice and helpful. I’m diabetic and have a number of factors to consider before getting pregnant too so I sort of understand how you feel.
    Good luck with everything :)
    Melissa x

    • Thank you so much! It really does make a difference when doctors listen to you rather than talking down to you (or in the case of my neurology pre-pregnancy, disagreeing with your specialist!). It’s important when we make such an important decision that it’s well informed and the right care is put in place to help things go as smoothly as possible. Thank you so much for your support. Xx

  • Yiotou_La

    It’s always nice when a doctor responds the way you would like to and understands your concerns. I am struggling with infertility and our doctor is the best, he treats us like friends, we go there and talk for hours and discuss our options. Sending you hugs Tania x


    • It really does make all the difference! I’m so sorry to hear that you’re struggling with infertility. This is something that’s playing on my mind, though I know it shouldn’t as we are so early on in trying. I’m so glad that you have a doctor who is not only good at what he does, but is also understanding and supportive during such a difficult time. I really hope that we both have success in 2017. If you ever want to talk, about anything, I’m always here for you. Xx

      • Yiotou_La

        Thank you so much Tania!! Hope 2017 is the year where we make our dreams come true :)

        • Me too! How great would it be if we were on this journey together!?! Xx

          • Yiotou_La

            It would be awesome!!!! :) xx

  • Glad to hear that things are looking up in regards to the pre-pregnancy appointment. I have to consult my neurologist, rheumatologist, and nephrologist if I ever want to get pregnant, and it has to be planned 6-9 months in advance because I take cellcept and keppra and they are not good for the baby. I do want children, but there’s a part of me that’s terrified because autism runs in our family (my sister and niece have it, and there’s a link between autoimmune disease and developmental disabilities in children)
    I wish you the best of luck in everything, and stay strong!


    • Thank you so much! You sound like you would be in a similar situation that I have been in terms of coming off medication. It took me a year and we started with the meds that I’d have to be off for a while before they were fully out of my system. I completely understand your concern regarding autism. Between Dan and I, we have three family members on the severe end of the spectrum. The link between autoimmune disease and autism is understandably a worry for you. If you do consider having children in the future, I’m always here for you. Xx