Endo specialist giving advice of "have a baby" or "loose weight" - SO frustrated!

[honeyhills]

Hi All,

Back in April I had a very sudden laparoscopy (from the cancellation list of a general gynae) which resulted in no findings whatsoever, with the surgeon saying afterwards "it's probably just IBS, you don't need to see gynaecology anymore". You can imagine how much of a shock this was to me as I've suffered with stereotypical endometriosis symptoms for years now, with them getting worse the last 3-4 years.

I ended up in A&E (for the 3rd time this year) in June with the pain and bleeding and they understood my struggles and referred me to Birmingham Women's hospital to see an endo specialist. I had the appointment yesterday.

She was much more knowledgable than other doctors I've previously been seen by and I've been fortunate enough to be referred to a pain clinic as well as for an MRI. But she said two things which frustrated me so much. 1) She asked me if I've ever tried to lose any weight to help with my symptoms (for reference I'm a size 12 and have been curvy since puberty with big hips) and 2) She asked if I'd thought about having a baby at all!

I've had the baby suggestion before and I can't help but feel infuriated/frustrated by it that Drs see that as a perfectly reasonable medical suggestion! With her also knowing that I sadly suffered a miscarriage last year, I don't think it's appropriate.

She had however, already suggested the usual of "try birth control" which I have tried all of, "try eating an anti-inflammatory diet" which I have done for years to manage IBS symptoms "Try the prostap injections" which I am not prepared to do at 24 years old.

I guess I'm just at a loss now. I feel so exhausted from being repeatedly let down by medical professionals, and it feels like the most lonely battle.

Is prostap my only next option? Do MRIs even work for diagnosis? Should I just "have a baby"?

Any help or advice or just a show of support would be hugely appreciated right now ❤️

[bluebug]

Sorry about the doctor.

It's actually common that if they decide you are overweight for your height they will tell you to lose weight regardless of what your issue is. Some also tell you to do more exercise. In reality often the issue the patient is complaining about can cause the weight problem and lack of activity. (Also if you do decide to take up any activity you will have up to 2 weeks where you can do very little.)

Next time any doctor suggest you have a baby tell them very bluntly that you lost a wanted pregnancy. Also be very blunt about your own age as I doubt if the doctor themselves had a child at 24 they would have qualified as a doctor. (I'm nearly twice your age but have had to be blunt to many healthcare professionals since childhood about my parents and siblings fertility as it wasn't what they expected. )

If you search this board Lindle has posted on how MRIs and ultrasound should be used in diagnosis, and the qualifications your technician should have. It's worth reading her posts before your MRI so you can ask the informative questions at your appointment. I was actually diagnosed with adenomyosis on ultrasound so while I then had to deal with one disbeliving doctor, she couldn't argue with the scan results.

[honeyhills in reply to bluebug]

thanks so much for you reply!

I hadn’t even thought of how having the symptoms can result in weight gain but that makes sense, it’s hard to exercise when you’re fatigued and exercise can make you in more pain!

I’m definitely going to check out Lindle on here as my Dr wasn’t really able to give me much solid evidence of MRI vs Lap for diagnoses.

[EndoTTC]

Hi Honeyhills,

So sorry to hear about all of this, I know how demoralising it can be to be given useless and even offensive advice.

I just thought I'd offer some advise on the Prostap question. I was put on Zoladex before my Laparoscopy and it really was hellish! I had all of the menopausal symptoms and wish I'd taken the HRT they'd suggested - I'm not saying this to scare you off Zoladex if you ever need it, just to say take the HRT!

By contrast, I'm now going through IVF and have been put on Prostap as part of my long cycle. I have to say it has been absolutely fine. I have had no symptoms at all and it has made my period like a 'normal' one, not that heavy, hardly painful at all, definitely not an Endo period.

So, if it is the symptoms and side effects you're concerned about it might be worth trying the Prostap and just see how your body reacts. I can really see now how it would give me my life back.

xx

[EndoTTC in reply to EndoTTC]

P.S. I was diagnosed via MRI, it gave a much more detailed result than the 3 ultrasounds I'd had previously.

[honeyhills in reply to EndoTTC]

Thanks for your reply!

The menopausal symptoms are definitely a big factor into me not wanting to have the prostap, from previous experience of using hormones like traditional pills, HRT, implant, depo provera injections etc I’ve always had the worst side effects!

But on the flip side, like you say it can give you a quality of life that I don’t really have right now!

[l_fulk]

The exact same situation happened to me. "It's IBS", "loose weight", "stay on birth control", "the pain is probably in your head and you're just stressed" 😡😤.

I'm about to turn 20 and I feel like my future is so dull with this pain and no help! Infertility scares me but they just say don't think about it, or forget about that.

Happy to chat if you ever want one! x

[Emmaja_ne]

I had a baby last year after trying for over a year. Yes my symptoms were so much better while I was pregnant however they came back with vengeance about 3 months after I had my baby. I don’t understand why this ‘have a baby’ suggestion is even a thing!