I have been waiting on being diagnosed for around 9/10 years now. I have been to so many GP and hospital appointments in time with no help. I was told they thought was PCOS to then be told it is not. I have had numerous scans and they can see nothing. I still have not had a laparoscopy and I dont understand why they wont give me one.
I am in constant pain most days , I get maybe 1 day in the week I am not in pain. It is sharp, twisting constant pain in my lower stomach. It now radiates across my hips and down my legs. It can sometimes come and go like contractions and makes me feel like I will be sick it is so painful.
I have had this now for the past year pretty constant and I also have been bleeding every day since November and this is while taking Cerelle everyday, nothing will stop the bleeding.
I have been told the waiting list now for me to see a gynecologist is 1 year, I don't think physically and mentally I can wait this long so I am now thinking of going private.
Does anyone have any advise at all in what to do and how to approach a private consultation?
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SamR93
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hey! I am also undiagnosed. Had problems for ten years, been seeking advice properly for 2.5 years so I understand your pain when no one listens!!!!
I waited a year to see a gynaecologist on the NHS who was flabbergasted by my erratic periods but just said contraception doesn’t suit you, come off it. That actually enlightened the problems as it all got worse as it was masking the other symptoms.
GP agreed with that it sounds like Endo, referred back to gynaecology, that was like 6 months ago and still nothing.
Tbh, I don’t think they really know anything about Endo.
Also been back and forth with specialists for my gastro problems, all my tests are clear so I feel like an Endo diagnosis would really solve all my problems 😂
So I’ve actually booked to see a private gynaecologist who specialises in Endometriosis in August. It’s costing about £150, but to me every penny is worth it. So I can speak to her, see what she thinks and what she thinks I should do.
Then if she says I should go for the surgery, I’ll go back on the NHS as that is much more expensive privately.
If I was you, I would do that too! I got the idea from this forum, as I had no idea you can just pay for an appointment.
I'm sorry you are struggling with this too! It is terrible anyone should have to wait this long for answers. The contraceptive pill for me seems to lighten my periods that's the only relief I get from it but if I do not take them it is constantly heavy for months. Now I am just lightly bleeding every day. I am also going to see a private specialist in endo at the end of August which is costing £200. I am hoping they can give me more answers that might push along the NHS to diagnose endo and treat.
It is the pain everyday I really struggle with, it is constant contractions like pain!
I feel like the GP's just keep giving me prescriptions for pain and thats it they wont actually look into the problem and waiting list for gyno is a year with them which totally gutted me when they told me that
Hi , long story very short I was diagnosed in 2009/2010 via a lap . I have since had 2 surgeries (one privately self funded ) the other NHS where I had an ovary removed . Not even a year later I’m in pain . Unfortunately, this will be the second time me Endo made a major surge .
I want to reassure you and say each time only a small cyst or indeed nothing has shown up on any scan , USS or MRI I have had. I was then diagnosed with Stage 3 everywhere in my lap . To such an extent the surgeon who is a specialist in his field , was shocked .Scans indicate but they don’t tell the full story . Mine was everywhere around the pararectal area , urethra , ovaries and uterus . Mainly that pesky pararectal area .
I was in your position in 2020 and I paid to see a well known Endo specialist . I looked up one of the most renowned surgeons in my area and one who I know was highly thought of . I paid £200 and was given a clear plan of action . It was well worth the money . I opted to go privately and took a loan out rather than wait on NHS . The second time I didn’t and waited a year as an urgent referral and had another surgery in 2022. Now, a year later I am in agony again and want to explore the possibility of a hysterectomy or further treatment . I have again contacted my consultant privately .
I recommend researching and finding a good Endo specialist you are willing to travel to . Most will have secretary details and directly contact the secretary to arrange an appointment. Unfortunately, wait times privately appear to have increased (waiting a month for a consultation) but it’s better than the NHS wait times and I’m desperate. Once you have your consultation you can decide to go private or go back nhs . At least you may have some clear direction and treatment options .
Thank you for telling me that , it does help hearing other peoples stories and knowing you are not alone but I am sorry you’re also going through this. I booked today to go see a specialist who costs £200 for a consultation privately and although I am in no way “wealthy “ I cannot live in this constant pain any longer. I am the same I am on the urgent referral for nhs but have been told wait list is a year!! My private appointment is end of august.
I just want a diagnosis and a plan of how to move forward and no longer be in pain and bleeding constantly. I’m hoping after the private consultation I can maybe go back to nhs with more answers if not I’ll need to try pay for treatment private.
Exactly the same with me . Not wealthy at all , just bloody desperate ! Unfortunately, MPs stripped gynae care and moved consultants to support other areas of the NHS during Covid . The government believed that gynae was of less importance than other specialisms . As a result the gynae consultants were left back filling other depts for longer than other specialisms . That has made waiting lists even longer ! No one should have to pay for their care . Saying that , I hope you get answers and at least have an idea of what the plan of action is. I wish you the best , please keep us posted !
Since my teens I suffered with heavy periods, In my early 20s I complained to gp a lot and had an early smear (clear) given pills to reduce the flow, back then told its just heavy periods. Never went back as it was just that.
New gp Diagnosed me with Fibromyalgia and chronic fatigue at 29 it felt my body was giving up on me. (I'm now mid 30s)
Weeks before the pandemic I had a new symptom, pain in my groin, since march 2020 with the support of my gp, I have been fighting to figure out what is wrong with me.
Last year I finally got diagnosed with endo and adenomyosis via laparoscopy before the huge backlogs really kicked in. Also luckily my local hospital is an endometriosis specialist hospital.
However since that day it hasn't been plain sailing, never got my post lap follow up, was in lots of pain. So my gp sent emails and suggestions to help me 'in house at the surgery' lap was in June 22 by October 22 gynaecology had agreed my gp could start me on zoladex with a view to hysterectomy(I have been asking about this since my early 30s seriously)
I was supposed to have a 6month follow up as zoladex is licensed for 6month (many are on it longer) March came and went. Some symptoms were returning. I went with the decision to see a private gynaecologist who specialises in endometriosis (she also works in the gynaecology dept at my local hospital too) it cost me around £200 for a private consultation with her at a Spire hospital. It was to help me make a plan of next steps and get back on the nhs list. In the end I was so happy with her, and i knew i couldnt wait any longer, I took a loan out and finally had a total hysterectomy with ovaries removed 4 weeks ago today. I am pain free for the first time in over a decade.
My opinion, if you can afford to go private do, even if it's just for a consultation to put a plan in place and then get back on the nhs waiting list, at least you will be on the surgery list not the consult list so hopefully a little less waiting time.
Thank you for sharing that’s really helpful! My story is almost the exact same. Since the age of 18 I had extremely heavy periods, I would not be able to leave the house it was too heavy and these would last months not days. I was first suspected of PCOS then told it definitely wasn’t as had no other symptom of that.
Then when I turned around 23 the intense pain started , pain so bad it would make me sick , I even became depressed and still mentally struggle because I am in so much pain. The pain will be every day and ranges from a cramp that’s dull and just never goes to one that’s intense and radiates down my legs. I also suffer with fatigue and because I bleed everyday I now have low iron and B12 so I have been prescribed supplements for that too
I asked at 27 for a hysterectomy because I couldn’t live like this and no one in the nhs would help me and they said no they wouldn’t do that as I’m too young. I have my private consultation booked now and I really hope they can give me some direction.
It is so debilitating, I loved playing netball and was always so active, it took away everything I loved. However, to stay positive, it has taught me so much about listening to my gut, my body, to be compassionate and kind to myself. It gave me time to self reflect and figure what I want for my future.
Once you have something concrete to go on, it will help you plan a way forward. I really hope you get a diagnosis and form a path through.
I'm almost 36 and even last year at 35 when I finally got seen by a gynaecologist, he still point blank refused a hysterectomy without even being fully diagnosed, the only good thing that came from that 5min apt which I waited a year for, was he booked me for a laparoscopy which diagnosed it all.
As soon as I went private the options became so much more positive the care received was as you'd expect and more.
Yeah I know what you mean , it changes you so much. On the days I’m not as sore I feel like I can be myself without having it constantly bringing me down.
I don’t understand why for around 7 years the nhs have not given me a laparoscopy and still won’t. I’ve had ultrasounds , biopsy and all come back clear but they won’t do a laparoscopy
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