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"gyneacology second opinion"

About: Ealing Hospital / Gynaecology Ealing Hospital / Trauma and orthopaedics

(as a service user),

my orthopeadist consultant reffered me to gyneacology department to get advice on my back, hip and groin pain that i had had for over 3 years and no obvious bone issues could be seen on scans. given that my pain started after preganacy the orthopeadist though that although gynea condition was unlikely the gynea consultant migh have some good advice. i got reffered just before covid and understandably my referal was put asside for a while and delayed as my case was not urgent and i had a phone appointment instead of in person last week.

The gynea consultant did not seem to have read much of my file as they made me repeat my whole history and i had to explain things in details as they were jumping to conclusions and not letting me describe the whole problem.

after hearing that the pain was usualy worse near my period they suggested i had endometriosis (despite having no symptoms: normal periods, period much less painful than when i was younger wich is the oposite of endometriosis progression) and despite agreeing that it was unlikely i had endo they still proposed a laparoscopy to diagnose.

The other proposed diagnostic after i mentioned the pain started after pregnancy, was that i had an uterine infection (for the past 3.5 years! unoticed and despite having taken appropriate antibiotic right after pregancy!). for that they proposed to prescribe antibiotics (without any test to check if there is actualy an infection!) and remouve my IUD (despite me making clear that the back pain started BEFORE having the IUD put in and that pain had not worsened at all since IUD). when i questioned how likely those diagnostic really were the doctor kind of agreed that they were very unlikely but got mad at me for mentioning it. i questioned the harm that a laparoscopy could do compared to the very low chance i had of having endo and again they got mad at me for raising it. 

i mentioned that i was hypermobile and that this can be exacerbated in pregnancy leading to joints or organs shifting places slightly due to preganacy hormones and progesterone levels (which would aslo explain why pain is worse near period) and mentioned EDS but they were completely unaware of this condition and denied any link with pregnancy. They said they had never heard of any of it and that no OBGYN that they knew was aware of this. they got ruder and ruder and told me it was for my GP to refer me to EDS specialist despite GP having ignored & abused me for years. They got even ruder and hanged up on me out of the blue after only 10-15 min call.

as an OBGYN they should know (and at least accept when informed by patients) that

During pregnancy, there are changes in the blood level concentration of various hormones such as oestrogen and progesterone, necessary to enable the fetus to grow in a proper well-balanced environment and to prepare the mother for the birth. Along with weight gain, a female’s body is out of balance with their shape taking a different form. Significant musculoskeletal strain can occur as a

result of the increase in weight, borne primarily by the lower back and pelvis (Taylor D. et al 1981). At the same time, female hormones and relaxin work to increase joint laxity (Ainsworth S.R. & Aulincino P. 1993). For some females, this may cause pre-existing problems to worsen and may trigger new joint pains and instability. Commonly described symptoms include pelvic girdle pain and sacroiliac joint dysfunction  caused by increased instability  of the joints, and low back pain caused by increased laxity in the spinal joints and weight gain.

my symptoms and how they started are consistent with PGP/SJD and EDS triggered by pregnancy a very likely cause even though i do not have an official EDS diagnostic. 

hEDS symptoms worsened for 26 % of the women during pregnancy and for 37.6 % during the postpartum period.It is significant that estradiol receptors are present in many of the body structures and organs including joints, skin, and cartilage.Joint laxity increases during pregnancy in some women.

Joint hypermobility per se is reasonably common and thought to be present in around 10% of the general UK population. A mean of 14 years elapses between the first clinical manifestations and the actual diagnosis. For 25% of patients, this delay lasts over 28 years.23 A misdiagnosis was given to 56% of patients [resulting in] inappropriate treatment in 70% of the patients…. For 86% of the patients, the delay in diagnosis was considered responsible for deleterious consequences. diagnosed and 70% of pt with EDS are women. After looking at all GP and hospital records in Wales between 1990 and 2017, UK researchers identified EDS – closer to 1 in 500, or 0.2%, rather than the currently cited statistic of 1 in 5000.

This shows that these conditions are actually not rare,

Recent research taking into account those living with the condition but with no diagnosis estimates the true prevalence EDS lies between 0.75 and 3.4% of the population.The BMJ found most men (72%) with the condition are diagnosed when they are under 18, but only 41% of women.

Researchers speculate this may be due to the assumption that women are naturally more flexible than men,.

Failure to diagnose the condition in adulthood may reflect medical systems that are inherently biased against female patients.  Countless studies show that women are often dismissed/ignored by the medical system, and their pain often “minimised and psychologised”. female EDS sufferers tend to have more complications due to physiological changes during monthly cycles and during pregnancy. most symptoms can be reduced with the help of a physiotherapist skilled in pelvic floor management.

ref: Royal College of General Practitioners, Orphanet Journal of Rare Diseases

Responses

Response from Peter Hare, Patients Services Manager, London North West University Healthcare NHS Trust 5 months ago
Peter Hare
Patients Services Manager,
London North West University Healthcare NHS Trust
Submitted on 26/02/2021 at 11:20
Published on Care Opinion at 11:20


Dear Madam

Thank you for sharing details of your recent appointment with a member of the Gynaecology team.

I was sorry to learn of your ongoing health issues and that you were dissatisfied with the outcome of your most recent consultation.

As these are very specific to you, I would be grateful if you could contact the Patient Relations team via email at LNWH-tr.patientrelations@nhs.net. We could then find the most suitable staff member within the Gynaecology team to initiate contact with you and talk through your concerns with you.

Thank you again for sharing your experience with us.

Kind regards

Peter Hare
Patient Servies Manager

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by morgane (a service user)

I feel that you could still pass on my story and the research information I shared here with the gynaecology department and make a full online reply on care opinion.

Response from Anjali Patel, Patient Experience Manager, London North West University Healthcare NHS Trust 5 months ago
Anjali Patel
Patient Experience Manager,
London North West University Healthcare NHS Trust
Submitted on 03/03/2021 at 11:24
Published on Care Opinion at 11:24


Dear Morgane,

I am sorry to hear that you did not find our initial response helpful.

We have shared your concerns with the service, who I am certain will have been disappointed to have received them. Unfortunately, without full visibility of your notes and care, it would not be appropriate for us to respond to your post in a meaningful way.

As your post is anonymous, we have no other way to identify or contact you. We would really like to help you resolve this matter and ensure that you receive the care that you require,

Please can ask that you write to our Patient Relations team with your concerns via email at LNWH-tr.patientrelations@nhs.net

Thank you again for taking the time to share your concerns with us and I am sorry that you have been left feeling mistreated following your experience with the Trust.

Kind regards

Anjali Patel

Patient Experience Manager

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
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