I'm feeling very anxious at the moment. Was diagnosed with hydrosalpinx 2 months ago and awaiting a gynae appt on 21st July (seems like ages away).
I was told that the hydrosalpinx was due to PID, however i'm in constant pain all the time, i also have PCO disgnosed about 9 years ago. Been backwards and forwards to my gp since my hydrosalpinx diagnosis and my gp has now said he suspects Endo.
This will be the 3rd time in about 14 years i've been referred to a gynae, the first two times i've been fobbed off, and i'm scared it will happen again.
Any advice for when i see the gynae?
Thanks in advance xx
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Nickimidge
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I also have hydrosalpinx (in both tubes) and had my first gynea appt exactly a year on the date yours will be...spooky!
I was lucky in that mine was picked up quickly, but it's taken 11 months and 2 weeks before I've been booked in for a laparoscopy to actually look into everything and check for endo too etc.
My advice would be to be very firm with them about wanting something done. I refused to be fobbed off and chased appointments, rang for cancellations and pretty much made a nuisance of myself (in a nice way!) but I still wish I'd put my foot down more and saved myself a year...and make friends with the consultants secretaries, they're very helpful.
Also, I too have had Constant pain but have recently had acupuncture and I swear it's made a difference to the daily pain - I'm hoping it's not psychological but even if it is, it's working! It's pricey but all docs would say is to take pain killers which had no affect at all so it's worth it in that respect.
I was admitted into hospital with the worst pain, they were treating it as my appendix, which it wasn't and because of my PCO history sent me for an ultrasound and internal scan, and thats how it was found. I've been in constant pain since, some days its just a dull annoying pain but some days its so crippling that i have to take days off work!
When i went to see my GP last week he said i really need to push for a lap! My main concern is waiting for that to be done as i know waiting lists for things are ridiculous! Xx
Oh my goodness it's like you're writing for me! Mine was either bad enough that I have to take time off or it was a constant dull pain but I was always 'aware' or it and something hurting and being there if that makes sense?!
Push for it and try every week for a cancellation...I'll have waited 3 months exactly from my gynea app to the actual op and that's not even a particularly long wait...I just hope it's not cancelled or delayed 😩
I'm hoping thats what there going to do for me. I'm petrified of having ny tube removed and really struggling to come to terms with that being the case as my GP has told me to prepare for the worst! I've got a scan next week to see how its getting on and i'm so scared about it.
Everyone looks at me odd aswell and they just don't understand what i'm feeling either because its not something they can physically see is wrong with me xxx
Im with you...the thought of having the only chance of having babies naturally taken away makes me so sad but if it risks the ivf working it's a necessary evil...
Ha well I understand you completely...the pain is real !!!
It makes me sad aswell. My partner and i have always known we've wanted children, but have enjoyed our lives together so much that we've never been in a rush to start a family. Upon finding this out, its all we want and we want it like now! We always knew that it may be a slight struggle knowing i had pco but this just feels like a complete kick in the teeth!xx
Literally just like us...I knew it was a possibility as I'd had bad abominable surgery as a child but when it's confirmed it sucks doesn't it
All I'd say is make sure you take time to keep doing things you both enjoy and make sure you have fun, it's a tough journey so had to have some good sides! xx
I had tubal repair last year. Write down all the questions you have and ask them. Don't be afraid of looking silly. Use the opportunity to get all the answers you need and a clear way of going forward. Good luck x
I had a tube removed 2 years ago due to a hydro, when they operated they found severe endometriosis.
When you get your appointment, go armed with a timeline of events, appointments you have had, symptoms you experience - when you get them, how bad are they, how do they affect your day to day life... eg pain during sex and or bowel movements, period pain, back pain, abdominal pain at times other than your period... push for a laparoscopy asap to get that tube out and discuss what you can give them consent to do during the op - remove both tubes if they find both are damaged? Remove patches of endo if found?
Make a list of all the questions you have no matter how silly you think they might be.
More than anything, don't let the consultant rush you through the appointment. Too often I've left appointments feeling fobbed off or that I forgot to answer something. Luckily I found a wonderful consultant in the end who always draws me little diagrams to explain what he means!
After my tube removal I needed a further op a year later to excise the endo before doing ivf and it changed my life! The pain was almost completely gone.
Brilliant you sound like you're nice and organised! Definitely ask about how they can manage your treatment so as to limit the impact on your fertility - some surgeons who are not specialists in endo try to recommend burning the endo off / ablation (not sure if that's the right terms...) but my surgeon said excision is best with severe endo. Good luck Hun and message me if you need any advice on anything. Oh and for when you do have surgery... you can expect to be quite sore for a couple of weeks, especially if you are in surgery a while. My ureter needed repairing during mine, which could have caused major kidney problems had my surgeon not spotted it xxxx
I have also had bad experience with my ex fertility consultant- he was so unsupportive and told me to "just relax!" Jesus it HIM making me more stressed! He just couldn't be arsed to find the reason we were having such a difficult time. Sadly some consultants are more interested in making profit- particularly in the fertility field...
Fast forward a few years and several gynae issues later= a referral to another fertility clinic and we met our consultant who has been amazing total opposite off our ex consultant.
I was given clomid- sadly I reacted badly on the forth round and have had severe pain on my lower left side for 6 months now- which I have been Back and forth to my gp with. I have tried all kinds of painkillers including trandol and an injection in my pelvis nothings worked. And no medic can tell me where,/ what is causing the pain. Like you it's seriously having a negative impact on my life. I find it difficult going to work and I hate letting colleagues down so I rarely don't go in but then in agony afterwards.
I saw my fertility consultant for an appointment in march who was very interested in this pain and he has booked up a laparoscopy- to include a dye test, ovarian drilling to promote ovulation, and is going to check/ treat endometriosis. My laparoscopy is this Wednesday- it's just over 9 weeks since I was placed on the list. Luckily for me he had a cancellation which meant I got my date faster- initially I was estimated to have op late June/ early July. I did phone to check where I was on the list regularly- and when a clerk didn't call me back I called her,! Next day I got offered a date!!! It does pay to a pain 😉 If this is all clear and the pain continues then I will have to go through bowel route 😨
Sorry to ramble on but wanted to share my story to emphasise with you. Just because your first consultant wasn't good doesn't mean the new won't be. Lightening doesn't usually strike twice. I know how awful it is and sometimes I have been paranoid- to the point where I nearly cancelled our appointment in march but luckily hubby wouldn't let me! Please have an open mind- I hope your new consultant is efficient and supportive it's so crucial to have that- so much rests in their hands.
As for advice- I'm sure others will have better advice- I would recommend that you bring someone else with you to the appointment as an witness- far less likely to be fobbed off. Plus it'll calm your nerves having support with you. When I was really referred it was in my name but I brought my hubby it was better for keeping me calm! Write down bullet points- what triggers your pain. Maybe keep a diary to see if there are triggers such as cycle times etc. I found keeping a diary helped and I felt slightly more in control and can help the medics see a bigger picture and be able to diagnose it easier. Write any questions you have. I also find planning things to look forward to helps- we have booked a holiday to Malta for my hubby's birthday in February!
Finally can you ask to be put on cancellation list if any appointments come suddenly available?
Ooh Jess I didn't realise you had your op so soon that's brilliant! Hope it goes ok lovely, the pain can be bad for a few days after a lap (don't know if you've had one before?) because of the air used to pump you up... peppermint tea helps, lots of rest and tlc. Let us know how it goes xxxx
Thank you Hun for the advice. And I haven't had one before. My husband's taken the week off to be with me. Hope you're ok x x x I will let you know how I get on. X
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